My theory of what causes CH's and how to (potentially) disrupt your cycle

[Shaun brearley]

3 hours ago, DJ Cluster said:

I'm glad you get peace of mind & pain relief from ol' tanky!

I'm certainly not discounting O2 for the future; I kinda see Sumatriptan as my parachute and the Oxygen as my reserve chute for when I'm about to hit the ground!

I also thought samitriptan was my life line but the trouble is when you are in full cycle and getting hit with up to 8 attacks a Day hitting kipp7 to kipp10 you can't use triptans to abort every attack that's why o2 should be your first line of defence . Plus over use of triptans can prolong your cycle and give you rebound attacks 

[DJ Cluster]

On 5/5/2022 at 9:17 PM, Shaun brearley said:

I also thought samitriptan was my life line but the trouble is when you are in full cycle and getting hit with up to 8 attacks a Day hitting kipp7 to kipp10 you can't use triptans to abort every attack that's why o2 should be your first line of defence . Plus over use of triptans can prolong your cycle and give you rebound attacks 

Oh yes, Sumatriptan is only a temporary help and even then it only really takes ten minutes off an attack for me.

My cycle is 2/3 attacks per day all year round so I don't want to be taking medicine for the rest of my days!

[DJ Cluster]

On 5/2/2022 at 5:33 PM, CHfather said:

What Shaun said is just what I was thinking (I notice that my thinking apparently contains a lot of typos!)  You can't run away from having it, but when you face it, you can do wise things to make it a whole lot less bad.  You clearly are searching for those things, as everyone here is, and coming up with some interesting discoveries.  But it's hard for me to see a reason why you wouldn't go for the D3 regimen full-bore, give busting a try, get oxygen, and maybe even give the new CGRP medications a shot (among other things).

The reason is I'm searching for the holy grail; a non-invasive & cost-free preventative! It's only anecdotal at this stage but I'm 95% sure I supressed my CH's & will do so again with better discipline.

Our Vitamin D levels are part of the problem but I'd suggest we just need the correct amount/intensity of light, at the right times, and our geographical locations definitely plays a part in our Vit D3 levels. [My regime includes getting as much sunlight as possible in the hours after I wake]

NOTE: I'm not here to dissuade anybody's regimen & I'm truly glad if people have helped themselves, but I'm looking into other ways to correct my VD levels.

Copy & pasted for example:

*Sunlight, in particular UVB between the wavelengths of 290 and 315 nm, is the main source for producing vitamin D in the skin and is the primary source of vitamin D for the body. It is estimated that 90% of the daily body requirements are met by sunlight exposure .

*One minimal erythemal dose (MED) of UVB exposure to 6% of the body surface area is equivalent to the ingestion of 600–1000 IU of vitamin D

*A recent Johns Hopkins Hospital study found 109 out of 134 CF adults in the clinic to be vitamin D deficient [serum 25(OH)D <30 ng/ml], and none of the 33 CF subjects who finished 1 200 000 IU of oral vitamin D2 over 4 months showed correction in their vitamin D status 

*Despite 50 000 IU of ergocalciferol once a week for a total of 16 weeks in vitamin D-deficient CF patients, all of the patients remained vitamin D deficient 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846322/

 

 

 

 

 

 

 

[DJ Cluster]

On 5/3/2022 at 2:46 AM, BoscoPiko said:

Obnoxious is all I can say about some things on this thread... don't get me wrong, I believe everyone is entitled to their way of handling CH, at the same time I don't think all of us prefer the ride it out, whatcha got method.. Then again I sit when I piss... so who knows... O2 is a proven citizen's science and medical science treatment so for those that prefer to not recognize it thats an individual loss. I may not have been able to abort many attacks with it but abortion of a few here and there gains me quality of life which I am so greatfull for. I don't understand alot of the medical lingo on here as of yet and am not sure if I even want to.. my take is this site is about help when you need it most, a place to educate one's self and find a way to live with what cards have been dealt us... sorry as this was certainly a rant...

My quality of life has improved because of the way I've dealt with the attacks and focusing on the pain during an attack is only way I can deal with it. I feel attacks last longer if I don't.

I've never said O2 isn't proven science, just that I'm not using it at the moment.

Rant over & sorry if I put the Cat among the Pigeons!

[BoscoPiko]

1 minute ago, DJ Cluster said:

My quality of life has improved because of the way I've dealt with the attacks and focusing on the pain during an attack is only way I can deal with it. I feel attacks last longer if I don't.

I've never said O2 isn't proven science, just that I'm not using it at the moment.

Rant over & sorry if I put the Cat among the Pigeons!

No worries at all. I'm glad that you have found a quality of life through due diligence. It wasn't even your post that put a burr in my bonnet.   I'm just a good old fashioned A-hole. No big deal that you are not using O2, we all have to be our own best advocate as no one else will.  Cups up to your continued success!

[CHfather]

1 hour ago, DJ Cluster said:

The reason is I'm searching for the holy grail; a non-invasive & cost-free preventative! It's only anecdotal at this stage but I'm 95% sure I supressed my CH's & will do so again with better discipline.

Our Vitamin D levels are part of the problem but I'd suggest we just need the correct amount/intensity of light, at the right times, and our geographical locations definitely plays a part in our Vit D3 levels. [My regime includes getting as much sunlight as possible in the hours after I wake]

NOTE: I'm not here to dissuade anybody's regimen & I'm truly glad if people have helped themselves, but I'm looking into other ways to correct my VD levels.

Copy & pasted for example:

*Sunlight, in particular UVB between the wavelengths of 290 and 315 nm, is the main source for producing vitamin D in the skin and is the primary source of vitamin D for the body. It is estimated that 90% of the daily body requirements are met by sunlight exposure .

*One minimal erythemal dose (MED) of UVB exposure to 6% of the body surface area is equivalent to the ingestion of 600–1000 IU of vitamin D

*A recent Johns Hopkins Hospital study found 109 out of 134 CF adults in the clinic to be vitamin D deficient [serum 25(OH)D <30 ng/ml], and none of the 33 CF subjects who finished 1 200 000 IU of oral vitamin D2 over 4 months showed correction in their vitamin D status 

*Despite 50 000 IU of ergocalciferol once a week for a total of 16 weeks in vitamin D-deficient CF patients, all of the patients remained vitamin D deficient 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846322/

You do you.  Bold experimentation got many people at this site to the better place where they are now, so no one is going to deny your privilege to do the same.  If you reach the grail and share it, we all will benefit.

But I'd be careful about putting too much stock in the quotes you provide here, since they are from a study of people who don't absorb vitamin D or absorb it very poorly -- "patients with malabsorption syndromes" as the article's title says.  So it stands to reason that they can cite the research you mention showing malabsorption in these patients, but it doesn't say anything at all about people with normal absorption. One reason I looked at the study is that the quotes you provide so are contradictory to what has been observed time and again with the D3 regimen, where D levels go up significantly as people take more D3 (and not D2, which is the stated product in one of the quotes).

The "minimal erythemal dose" mentioned in one quote means "the minimum amount of x-rays or other form of radiation sufficient to produce redness of the skin after application, regarded as the dose that is safe to give at one time."  You would have to create a whole lot of redness, or mild sunburn, all over your body day after day, to get to a substantial daily dose of D.  The increases reported in this study from using the sunlamps for eight weeks might be beneficial to the patients in the study, but they are trivial in relationship to getting D to a level where it makes a difference for CH.  Plus, it appears that the tanning machine (not cost-free) couldn't sustain increases.

Maybe the first quote, about sunlight, is accurate. But there have been many people here who have believed that their pattern of daily activities, from working outside to a lot of daily outdoor recreation or gardening, would have given them a satisfactory D level -- and were surprised to find out that they were at or below even the minimum level, let alone the substantially higher level needed to combat CH.  I don't know what they are considering the "daily body requirements" in that quote, but the level of D required to combat CH is substantially higher than what medicine considers to be the "daily body requirements."

Like I say, bless you in your search for a "non-invasive & cost-free preventative."  Something is working for you now, which is great, and who knows what you might discover.

[Bejeeber]

2 hours ago, BoscoPiko said:

It wasn't even your post that put a burr in my bonnet.

I'll back @BoscoPiko up on that!!! There were some things said in a post that could be taken as offensive (they were taken that way by me, and my personal bonnet was becoming uncomfortable for a sec there), but the original poster kindly and voluntarily edited them out, so I feel like we're all good now, family back in harmony.