Freud Posted July 6, 2019 Share Posted July 6, 2019 (edited) Hey fellow clusterheads and supporters. After several people have strongly encouraged me to go to the CB conference, my parents decided to send me this year. I’m a little apprehensive bc I’m going through a M tank a day right now and my CH is at its all time worst. However, it will get me out of the house and submerged in a community of fellow sufferers. Bostonheadachedoc feels that it is important for me to meet other chronics. Most of the CH people I have become friends with and/or have met in person are episodic. I’m not sure it makes a difference we all suffer the same excruciating pain. But none the less I am now booked and looking forward to meeting many of you. So I figured I’d make this post to see who’s going to make sure I at least get to shake your hands. Pain free wishes! Brian Edited July 6, 2019 by Freud Quote Link to comment Share on other sites More sharing options...
dmlonghorn Posted July 6, 2019 Share Posted July 6, 2019 Awesome! I'm bringing my wife and parents. Looking forward to my first conference, never met another CH'er in person. Quote Link to comment Share on other sites More sharing options...
Freud Posted July 6, 2019 Author Share Posted July 6, 2019 That’s great, I wish my parents wanted to go. Honestly I think living with me has them at there limit. My CH is at its all time worst and it’s taking a toll on them. The only good thing about this debilitating CCH is I had to move back in with them, and have found my father half dead from septic shock 4-6 times in the last year. If it wasn’t for this CCH I would have never been here to save him. In a former life I did high risk neonatal and adult critical care... so as miserable as I’ve been CCH saved my father’s life. Hope my little story helps y’all see the silver lining in some of this.looking forward to meeting you! Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted July 7, 2019 Share Posted July 7, 2019 You can bet I'm gonna be there dude! Spent almost 43 of my 72 years in Cow Town and Dallas! Looking forward to meeting ya my friend! This will be my 4th conference in the past 10 years...1st in Portland in 2010, only around 40 of us.....we've come A LONG WAY since then.....you'll meet a couple hundred of us I reckon!! Don't worry about O2!!! Clusterbusters will have plenty on hand and you'll be able to check out a cylinder for your room..just bring your reg and mask. DD Quote Link to comment Share on other sites More sharing options...
Freud Posted July 7, 2019 Author Share Posted July 7, 2019 Sounds good. I’ll bring a E and M reg and a bunch of trex. Just don’t want to be suffering when I meet y’all. Looking forward to shaking your hand DD! And many others i hope @CHfather will be there and batch and all the regulars here. Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted July 7, 2019 Share Posted July 7, 2019 I'll be there. Flying in that Tuesday..... 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted July 7, 2019 Author Share Posted July 7, 2019 (edited) 12 hours ago, Racer1_NC said: I'll be there. Flying in that Tuesday..... Very cool, Dallas has an amazing food scene. Since you’re going early I have a few recommendations if you’re interested. I’d say “Fuel City” tacos are a must. It’s a gas station that’s open 24h and is always busy. There tacos are freaking amazing. I’m pretty sure I’m going to cab/Uber there if anyone is interested. Oishii sushi is great, one of my good friends owns it and sitting at the sushi bar is like the show cheers. The moth is another great place. Amazing beers on tap and the food is real good. I’ve got a few more but I’ll stop there. Edit: I realize beer is out for many of us but a friend that went last year told me he was in shock by how many people were drinking. He said he started asking people how they were able to drink and everyone told him I use MM, L... And thats when he concluded this busting stuff is for real. Edited July 8, 2019 by Freud Quote Link to comment Share on other sites More sharing options...
FunTimes Posted July 8, 2019 Share Posted July 8, 2019 I will be flying in on Thursday morning for my second conference. I am staying across the street at the Marriott with my brother in law. Looking forward to it! Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted July 8, 2019 Share Posted July 8, 2019 I'm always open to local restaurants. It's been several years since my last visit to Dallas (connecting flights not included) so I'm not up on the best places. Keep the suggestions coming! Quote Link to comment Share on other sites More sharing options...
Freud Posted July 10, 2019 Author Share Posted July 10, 2019 (edited) Ok @Racer1_NC despite one of my good friends having a great busy sushi place, this place Yutaka hands down is the most amazing sushi offerings I have ever had. His fish is so decadent it just melts in your mouth. My friends place burnt down a few months after he redid his whole place and I had no where to eat sushi. So I tried this small and pricy place yutaka. I sat down w a friend and asked chef yutaka if we could eat omakase “chef’s choice”. I am convinced outside of Japan I will never have sushi that good. He will only do omikase on nights where he doesn’t feel overwhelmed so it’s probably not an option and ran at least $150 a person but it was worth every penny! This was in a different life I was working so much I was happy I got home to eat before everything closed most nights. On a more affordable note there is a market that does all prepared food called Eatzi’s. There were 3 in the metroplex, the busiest was the one in Oaklawn in Dallas but there is one in grapevine close to the hotel. It’s the same food as all the other markets just not as busy. Friday night the in house bakers make pizza I think there are only 3 to choose from and they make it until they run out of dough. An amazing option on Friday night! All the food there is fresh, made in house and was a staple in my diet. I’m probably going to do eatzi’s on Friday unless I go to the bishop’s art district and go to Eno’s pizzaria. They have a pie called the pigleywiggley that is amazing. Plus others and good beer on tap if you’re one of the people that can drink. Taco kitchen is another great place. I prefer the one in Dallas over the one closer to the hotel if it’s still open. There are a ton of high end $$$ places in Dallas I have left off except for yutaka. I am attaching a link to a new article by the Dallas observer of the top 100. I haven’t lived there in over 5 years so a lot has changed. I’ll come up w a few more, just have to look them up and make sure they are still open. Looking forward to meeting you. https://www.dallasobserver.com/top-100-dallas-restaurants/yutaka-sushi-bistro-6455527 wow I almost forgot Bolsa just amazing, if you’re a vegetarian (my Gf at the time was) they will cook a special meal to meet your needs off the menu Brian Edited July 10, 2019 by Freud Quote Link to comment Share on other sites More sharing options...
Freud Posted July 10, 2019 Author Share Posted July 10, 2019 And how could I forget La Duni Latin Cafe. They have a few locations but the McKinney ave place is best now that the oaklawn place is closed. Amazing brunch lunch and dinner. I have a few favorites there so let me know if you go. Man did I love to eat in Dallas. More so than in NYC and that’s saying a lot. Quote Link to comment Share on other sites More sharing options...
Freud Posted July 10, 2019 Author Share Posted July 10, 2019 (edited) @Dallas Denny do you have any DFW favorites, I know fort worthless (I kid I hated driving to ft worth to operate. It was second class next to Dallas) has some good places I just never ate there. Very curious what you have to say about my recommendations. Edited July 10, 2019 by Freud Quote Link to comment Share on other sites More sharing options...
Freud Posted July 10, 2019 Author Share Posted July 10, 2019 Most of us probably won’t go out for brunch on Sunday, but if you do just know when church lets out all over the metroplex it’s impossible to get a table at most decent places. You don’t really see that in the NE. Quote Link to comment Share on other sites More sharing options...
Tim Flanigan Posted July 10, 2019 Share Posted July 10, 2019 Hi this is Tim from Pittsburgh I'll be there also. Quote Link to comment Share on other sites More sharing options...
Freud Posted July 10, 2019 Author Share Posted July 10, 2019 Hi Tim, nice to meet you. I replied to a post of yours from last year. If you’d like to talk at the conference let me know. Brian Quote Link to comment Share on other sites More sharing options...
Freud Posted July 10, 2019 Author Share Posted July 10, 2019 And man did you guys get to that show at red rocks?i e always wanted to see a jam band there. Quote Link to comment Share on other sites More sharing options...
Tim Flanigan Posted July 10, 2019 Share Posted July 10, 2019 5 hours ago, Freud said: Hi Tim, nice to meet you. I replied to a post of yours from last year. If you’d like to talk at the conference let me know. Brian Yes definitely Quote Link to comment Share on other sites More sharing options...
Freud Posted July 11, 2019 Author Share Posted July 11, 2019 I’m so glad I started this thread. I’ve never been to a CB conference. Do we all we are aka name tags. Lol Quote Link to comment Share on other sites More sharing options...
dmlonghorn Posted July 11, 2019 Share Posted July 11, 2019 35 minutes ago, Freud said: name tags. Lol oh man, that would mean I had the chance to be referred to as "Mister Awesome" in public... so many regrets! Quote Link to comment Share on other sites More sharing options...
Freud Posted July 11, 2019 Author Share Posted July 11, 2019 (edited) Ha, in a former life I had the name Adrenalinjunkey. Lol. Now I get enough adrenaline going during an attack to power a U Boat. Edited July 11, 2019 by Freud Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted July 11, 2019 Share Posted July 11, 2019 Hey Brian It's been close to 8 years since I escaped the Metromess and to be honest I'm not much of a "foody"....goin out to eat usually means beer & bbq or fried catfish, hushpuppy and coleslaw...lol! But, I'm fairly certain that my favorite bbq place, Bakers Ribs, has a location near the conference hotel. I DO know where some of the best honky tonks and dance halls are though...lmao! DD Quote Link to comment Share on other sites More sharing options...
Freud Posted July 11, 2019 Author Share Posted July 11, 2019 Ewww, I have a perfect record turning down trips to the honky tonks. Lol. I did read about a new BBQ joint in the observer article I posted. It made me think twice about going there. I think it was in Farmersbranch in an unassuming location. I’ll have to find it again. Do you do pizza and beer DD? Enos in Bishops arts district could be a cool outing. Quote Link to comment Share on other sites More sharing options...
xxx Posted July 11, 2019 Share Posted July 11, 2019 (edited) Brian, Meeting other CHers for the first time at a CHer gathering like this is a very special thing... Just knowing you're not alone with this disorder is reason enough to attend. The really interesting thing is you'll meet a CHer you've never met at an event like this and in a few minutes talking with them, it will seem like you've known them for many years. I'll be there with the latest data from the online survey. Take care, V/R, Batch Edited July 12, 2019 by Batch 2 Quote Link to comment Share on other sites More sharing options...
Freud Posted July 12, 2019 Author Share Posted July 12, 2019 Looking forward to shaking your hand and picking your brain. Unfortunately I have yet to start the protocol. However, I am sure when I see BHD he will be more than happy to order the labs I need (my last PTH was boarderline high as well as Ca++) and not to say “well I’m ok with it, but have some one else draw the labs and follow up with you.” I hardly see my primary doc, I see him once a year for a H&P. I see my CH doc every month to three months. I’ve been an uncontrolled CCH since I started this ride 2 years ago. But I am looking forward to starting, my 25(OH)D is 30! My fathers is 33 and he was taking 15,000 IU/Day for ever. He has RA and I told him it’s the anti inflammatory regime... That he needs to do a loading dose otherwise he’s never going to get it over 80-90. Any suggestions for him? Quote Link to comment Share on other sites More sharing options...
xxx Posted July 12, 2019 Share Posted July 12, 2019 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 1 1 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.