Who’s going to Dallas this year?

[Freud]

Wow Batch thanks for all the info!  I wasn’t specifically looking for an RA taylored program but how is the best way to bump him up. You’re knowledge and desire to help others is honorable!

 

thanks again

 

Brian

 

So my last dose of L was Sunday. Tuesday and Wednesday I actually got 3 hrs of sleep a night. Then I got hit all day yesterday until 3am. Slept to 1030am today which hasn’t happened in 4 months. I’ve only had one CH today so far!  So I’m probably going to dose w L tomorrow. And stretch it out a week at a time to a month if I can make it. Then monthly doses. I’m getting ahead of myself but it just might be working again!

 

 

[MoxieGirl]

I REALLY wish I could attend this year. I used to live in Dallas, have friends there and miss it a bit. I'd love to come and read my cluster poem. Maybe one day.

Can you please take lots of pictures of people and post them??

 

xx Mox

[Freud]

Only problem with that is the file size restrictions here. I’ll try and snap some pics but I just use my phone and am not the best at selfies...  although there are several of you I want a pic with so I’ll have to nab some one and ask a favor....

[Freud]

On 7/12/2019 at 6:33 PM, Batch said:

Freud,

Providing information outreach on RA is a little out of my comfort zone...  That said, as it falls in the autoimmune category, RA should respond to vitamin D3 therapy.  The only question is how high to take the vitamin D3 dose/25(OH)D response, how much the cofactors need to be increased and any additional conutrients specific to RA that may be needed. 

The anti-inflammatory regimen is a good place to start, but the target 25(OH)D may be well North of 120 ng/mL, like 180 ng/mL for RA.  I say this as I've been there at 188 ng/mL and it depressed my PTH as expected which is good.  The only issue is being careful not to depress PTH to zero as we need the parathyroids to continue functioning and not shutdown. The reason for this is simple, we need PTH to maintain calcium homeostasis that maintains serum calcium within its normal reference range. 

In this case, I pushed my PTH down to 10 pg/mL when the normal reference range is 14 to 64 pg/mL as you'll see in my lab results.  This is no different than taking prednisone at too high a dose for too long.  The adrenal glands produce the steroids aldosterone and cortisol that are essential for normal healthy physiology.  If we take too much prednisone for too long, the adrenals say WTF.  Why should I make aldosterone and cortisol when there's so much prednisone floating around... so they shut down.  That poses a big problem when you stop taking prednisone and the reason why it is absolutely essential to taper off steroids gradually or only take steroids in short burst doses or week to 10-day tapers.

I'm a pragmatist when it comes to preventing CH with vitamin D3 therapy...  The expected result of taking the anti-inflammatory regimen is a CH pain free response.   Accordingly, I take as much vitamin D3 as needed to stop my CH.  This allows me to maintain a very good quality of life, in excellent health, free of terrible CH pain.  My lab results for 25(OH)D, calcium and PTH in the following chart are a good example. 

On the 1st of March, 2018, I increased my vitamin D3 dose to 40,000 IU/day in anticipation of a heavy Alder tree pollen fall in April.  On 20 March I had my labs done and my 25(OH)D was 188 ng/mL.  As I was CH pain free I dropped the dose to 25,000 IU/day.  As you can see, my serum calcium was still within its normal reference range and PTH was low. In early June, I suffered a major insult from mold spores that triggered an onerous allergic reaction (allergic rhinitis) with a flood of histamine.   Histamine can make nearly every CH intervention ineffective... so the CH beast jumped ugly.  An electrician had ripped out wall board to replace a 50-year-old fuse box in the house in Pelican, AK were we stay while salmon fishing each summer.  Unbeknownst to me, there was a half-inch layer of mold in the wall space from years of roof leaks.  Within 24 hours of the electrician's work, the stirred up mold spores had the CH beast jumping ugly at night for the first time in many years. 

Two days of vitamin D3 at 50,000 IU/day and 25 mg of Benadryl (Diphenhydramine HCL) every four hours had no effect.  Fortunately, I had welder's oxygen available and I made a couple of my Redneck oxygen reservoir bags out of clean kitchen trash bags, so the CH hits were more of an annoyance that anything else.  However, as we were getting up around 04:30 each morning to get an early start fishing, the lack of sleep had me on edge.  Rather than trying to sneak up on a therapeutic response taking loading doses of 50,000 IU/day, I took 100,000 IU/day for two days. 

The night after the second dose of 100,000 IU/day vitamin D3, I slept CH pain free so I dropped the vitamin D3 dose back to 40,000 IU/day for the rest of my two-week stay in Pelican.  I estimate my serum 25(OH)D concentration was around 175 ng/mL in June when the CH beast jumped ugly due to the allergic reaction to the mold spores.  That should give you an idea how bad an allergic reaction can be to a CHer.

On 1 July 2018, I switched to the Bio-Tech D3-50 50,000 IU water soluble (micellized) form of vitamin D3 taking one of the Bio-Tech D3-50 capsules every 5 days (120 hours) for an average daily dose of 10,000 IU/day.  When I had my next set of labs on 12 October 2018, I expected my 25(OH)D serum concentration would have dropped from 188 ng/mL to at least 170 ng/mL.  When it came back at 181 ng/mL, I was a bit surprised.  As I was blissfully CH pain free, I decided it was time for one of by 25(OH)D burn down tests so stopped taking any supplemental vitamin D3, but I continued taking all the cofactors and conutrients.  My 25(OH)D serum concentration was 136 ng/mL at my next set of labs on 14 January 2019, 95 days later, for a monthly 25(OH)D burn rate of 14.2 ng/mL..

As I was still CH pain free, I decided to try taking one Bio-Tech D3-50 water soluble capsules a week for an average daily vitamin D3 intake of 7,142 ng/day.  At my next set of labs a little over 3 months later on 26 April 2019, the results came back at 152 ng/mL, so it was very clear the Bio-Tech D3-50 was more potent in terms of elevating/maintaining 25(OH)D serum concentration at the same dose as the oil-based liquid softgel vitamin D3 formulations.

I'll cover a lot more about this regimen at the Patient Conference in Dallas.  Looking forward to seeing all of you there.

V/R, Batch

So bottom line is, if he’s been taking 15-20k a day of the oil based switching him to the biotec will have a marked improvement in raising his 25(OH)D. I know his primary care doc won’t be happy pushing his D over 100ng/mL. But I’d like to get him as high as possible with out ruffelling feathers. Then presenting this info plus what I get at the conference to his rheumatologist. Dad takes a whole slew of supplements every day but I have to go through them and see if I can get him to add what ever cofactors he’s missing. I know he needs the Kirkland multi w boron. He’s not taking a multi...  I’m going to do my best, he can be a bit stubborn... my sister suffers from RA even worse and I’m going to see if she will try it... thanks @Batch

[Freud]

https://vitamindwiki.com/Search+Results?hl=en&oe=UTF-8&ie=UTF-8&btnG=Google+Search&googles.x=0&googles.y=0&q=Cluster+headache&domains=vitamindwiki.com&sitesearch=vitamindwiki.com@Batch is this site something you’re involved in? 

 

Edit: it’s been a while since I clicked on that wiki I guess it got a face lift. Looking good Peter!  I’m going to spend some time there now. Looks like a ton more info than the old wiki. 

Edited July 14, 2019 by Freud

[Dallas Denny]

That's an affirmative on the pizza and beer Freud!

Lmao at "perfect record of resisting honky tonks"......I lived in Cowtown from 68 to 84 and played guitar and sang in bands the majority of that time period.....I imagine I've sang a country song in near about every honkytonk in town!!

Sounds like we're gonna have a big crowd with lots of 1st timers this year so really looking forward to meeting all of ya'll...I had the pleasure of meeting Pete in Austin after knowing him online for many years and looking forward to seeing him again......and I've talked to several folks that I've met and known here for a long time ( all from the early days of the board but who are no longer active here) but have never met in person that are coming as well.....AND, I finally get to meet my co-conspirator, err,  umm, I mean co-moderator Spiny in person AND, bejeebers is gonna try to make it up from Austin......and, of course, my BFF "hipshot" AKA Hollywood Dan of Nat Geo fame will be there!  

Shit the bed Loretta!  It's  gonna  get rowdy ya'll......Yeeee Feckin Hawwww!

DD

[Freud]

32 minutes ago, Dallas Denny said:

Shit the bed Loretta!  It's  gonna  get rowdy ya'll......Yeeee Feckin Hawwww!

Lmao DD, that’s amazing about the  veteran board members coming for the first time!  Well we just may have to plan an outing to the Bishops Arts Distrect DD. If you’ve never had the “pigley wiggley” @ Enos and a revolver beer (or any of the high alcohol TX brews) It’s almost a must. However, I do plan on getting pizza from Eatzis on Friday night and bringing it back to the hotel. So may be it will be an either or. I also have strict orders from Mom, Sis, and my best friend NOT to come home with out a white chocolate apricot bread for each of them from Eatzi’s. That in the toaster is heavenly...  I’ll turn you into a foodie yet DD .  I’m no hoity toyte foodie. I just love to eat tasty things. From $1.50 gas station tacos to 10 course meals, I don’t descriminate.  It was a much better hobbie when I could consume 4-6k calories a day and not gain weight. Hmmm, have you ever eaten fuel city Tacos DD?  Do you have your own favorite gas station tacos?

Edited July 15, 2019 by Freud

[Racer1_NC]

On ‎7‎/‎15‎/‎2019 at 7:16 AM, Dallas Denny said:

......and I've talked to several folks that I've met and known here for a long time ( all from the early days of the board but who are no longer active here) but have never met in person that are coming as well.....

Inquiring minds want to know. Fill us in DD. Not being privy to the Facebook chatter it would be great to know who is coming.

 

And I'm all in for Pizza.....

 

As for pics.....Back in the days of OUCH I used to fill up CH.com with convention pics but have never really done so for CB. I always figured people might value privacy at these gatherings. Plus it's nice not snapping pics all the time. That being said I could be talked in to taking a few and posting them up as long as everyone was good with it.

[Freud]

@Racer1_NC we can decide when we get there if we just want to get pies from Eatzi’s, or venture out to Dallas and go to Enos. Both are equally good!  A few of us going out to pick up pies may be easier than the whole lot of us going to Enos. Just a thought...I guess it would all depend on if there was a place to gather and bring the pizza to at the hotel...  

I would be happy to have some photos from the conference. I wouldn’t want to be snapping off a million photos, plus I value and respect your thoughts on privacy.  After all mm and busting is still illegal. Not that I worry or anything. I wonder if anyone will be dosing while there. I’m on a every 5 days schedule right now. I know others are on some what similar schedules.  This could get interesting. 

 

Looking forward to to meeting y’all. 

 

Brian

[spiny]

Freud, it has gotten interesting in the past from what I have heard! :

Since I can get lost in an elevator with two doors, I will likely stay at the hotel! But good pizza would be appreciated. 

I have not been to Dallas since the sixties. Originally from Shreveport, just an hour away from there.I arrive at 1:45, assuming the plane is on time. So, I should be at the hotel buy 3pm or so. Really looking forward to meeting several people  Assuming the beast stays away, a few cocktails would be nice too! 

I've not flown since CH decided to go over the top many years ago. So, that is a hurdle too. I would really love to celebrate the Equinox with few drinks assuming that I can get away with it!!! I checked with American and they told me that I could buy Starbucks and such post security and take that on the plane with me instead of relying on their lousy coffee. And I plan to tote an o2 concentrator on the plane to keep from being hit by the drop in pressure. Yes, I know that it may not or is likely not to work, but any security blanket in a storm, right?   

[Freud]

You’re too funny @spiny!  If we do venture out we promise not to loose you. I’d be happy to grab pizzas from Eatzi’s. It’s kikw no other pizza I’ve had. I remember my favorite was a margarita pie, then there was a goat cheese pie that I remember being real good, and one w meat. I think that was it. 

You’re on your own with the alcohol, I haven’t touched the stuff since the CHs started. Although I’ve often thought of just having a beer while I’m getting hit already but I never do. 

I haven’t flew since I started getting CH so this should be interesting. I plan on bringing many injections for this purpose. I think I have a 3 hr flight so a few injections should cover it. My oxygen supplier wanted to Y two concentrator together thinking that would give me 10LPM +10LPM=20LPM. I told them it wouldn’t work like that. You would still get 10LPM....  I suppose it’s worth a shot, a couple of people have said it works for them. I need high flows 25LPM aborts the best for me. 15LPM and I have a 25-50% abort rate.... 75% or better w 25LPM...

ill snag some coffee too, but I never see a difference between my caffeine consumption and my CH though.  I just happen to love coffee. There are a few great coffee places in Dallas as well if they are still open. 

[spiny]

There's a great place in Shreveport where you can get a frozen margarita in the drive through and take it with you!!!  They tape a straw over the hole in the lid and sell it as 'closed container'!!!!! We need a banner of drinks here.......... I am amazed they are still in business. I don't indulge when in cycle either!

I can't take Trex, so that is not an option. I'll just cross my fingers and get there just fine. Or that is the mind set I plan to run with. Do all I can to make things go smoothly and then chill out.  

This will be my first flight in 15 years.

[Freud]

There was a place like that in Dallas as well. Run by some Jamaicans. It’s by fuel city. 

[ThatHurtsMyHead]

Looks like some of the old crew and many of the new crew will be there this year.  I'll be there as well.  Looking forward to pizza with DD, Bill, Spiny, Batch and of course some of our new active board members as well.   (Freud, etc.).. 

Looking forward to it!!

Cheers!

J

[Freud]

@ThatHurtsMyHead glad you decided to go, looking forward to meeting you as well. 

 

@spinyit’s still open!!!

Daquirs To Go, 543 S Riverfront Blvd, Dallas, TX 75207

pribably 25 min from the hotel, but i do plan on getting fuel city tacos one night. It’s a must. We could go here as well. It’s just down the road. 

[FunTimes]

Sounds like a good one this year. I might need to order 2 flighs of energy shots at the bar for all the people who have helped me out in the past! 

 

[Freud]

3 minutes ago, FunTimes said:

Sounds like a good one this year. I might need to order 2 flighs of energy shots at the bar for all the people who have helped me out in the past! 

 

From what I’ve heard from some one who went last year is that a lot of people will be drinking alcohol. Which shocked the hell out of him. Finally he started asking people how?  Every one of them said “I dose/ bust....”. He was in awe, now he’s a member of the busting camp, leading a happy mainly pain free life. One day we will be sipping drinks @FunTimes, sharing our early CH stories! Anyone say screw it and have a drink while they are getting hit?  Does it make a CH any worse?

[FunTimes]

A few times I have said the hell with it and got hammered. I was on the o2 tank a few times the first hour but powered through and kept on poring shots. That was with Crown Royal and about a half gallon. funny thing is after the night of drinkin I got 2 or 3 PF days. 

Now the last time I tried this I ended up banging my head on the floor for 3 strong hours with nothing easing the pain. I have not had the guts to give it a try again. Almost did this past weekend but could not bring myself to try. 

[Freud]

I hear ya, I have come close to saying the hell with it and drink a beer while mid hit but I chickened out. Since you’re the only member in my area I know if besides boat man. I dosed yesterday, I’m tired of drinking the tea so I got s peach banana smoothie from Wawa (freaking amazing, I just discovered these things) and powdered my mm in a magic bullett. Mixed the two and wala it went down real easy. No bad taste, actually enjoyable. I discovered the smoothies and have been trying the brain freeze thing. Didn’t help much but they taste so good. I’m hooked!  I’d make sure you pulse them. Mom was doing it for me while i was doing Myco work and she just kept the blades going for far too long. The kitchen smelt like burnt dung (ang my mm don’t taste like “shit” the have a distinct dry mm taste but not the heavy manure taste as when I got wild mm as a teen.  Grab a smoothie today I think it’s going to be another hot one. There is practically a Wawa every few miles around here. 

 

Cheers, enjoy!

 

PS: what’s your surgical date?

[FunTimes]

Gonna try that smoothie next time! I get the hip replaced on August 5th so I should be good for Dallas 

[spiny]

Looks like a meet and greet group is forming!!! So glad that you are coming Jeff! Bring boat pics.  

Freud - We need to get the drinks to go. People don't even believe it is possible.  

Fun Times - The last time I drank during cycle was Christmas about five years ago. I took a sip of wine and shot out of the living room full of company like a rocket. Woke later huffing O2. Not sure why I don't remember it! But, I never tried that again. Insert chicken sounds here! 

[FunTimes]

I went to the convention last year and met a bunch of people but did not ask any screen names. I did not have my screen name on my tag either and was never asked. This is the only online forum I have ever been a part of and figured it was more of a respect the privacy thing so I did not think of asking any questions. I would love to meet you all and be on a real first name basis with you all and be able to help out whoever I can. I think it is so cool that members like DD and Jon know someone or have a friend just about any place another member is in need of help. I am new to this site compared to most but would like to keep this thing growing and spread the word about this. Just about every day another new member joins this site and has been suffering for many years. why does it take so long to find out about us?