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ClusterBusters

Freud

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Posts posted by Freud


  1. For sure, many have come here making the same claims about keto diets, but like you said. Some things work for some people some times. Then wala, their “cure” doesn’t work any more. I’ll stop spamming this thread and the other cure thread. It just erks me when people come here touting cures and don’t even know what busting is or have never tried it.  For the life of me I don’t understand why they aren’t willing to try it. No drastic life style modifications, just a few doses and wala, most episodics can abort a cycle....

    • Like 1

  2. 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. 


  3.  “And we can actually focus on the technique rather than getting lost in semantics.”

    Not for nothing but, saying you found a “cure” for CH isn’t “semantics” when you haven’t cured yourself or others.   Unfortunately I reread your edit and the whole thread, may be you would have a better reception at http://Clusterheadachs.com

    Do you even know what busting is or tried it? Back to your thread, what exactly does pushing on your arm pit do?  With a fist, a finger, there is a lot of territory under there. How long do we hold pressure for. Does tickling help too?  

    Edit: let’s be clear tickling the arm pit.


  4. @jon019 I couldn’t have said it better myself!  For some reason even with the blue button this place is being treated like ch.com and not cluster “busters”. Even after you educate people what this place is all about they still want to reinvent the wheel. I get that some people won’t do anything illegal, and even resort to brain surgery. But as cluster survivor states in his YouTube video he regrets his decision and old logic bc busting changed his life...  


  5. @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


  6. 2 hours ago, ClusterSwarm said:

    Don’t draw your line in the sand with doctors. Think outside the box. This is a savage illness. 

    This is not outside the box thinking it’s just damn wrong. As Bostonheadachedoc will tell you opiates have no role in CH. Cambia a NSAID is a pain killer of sorts but a potent anti inflammatory has stopped a few of my CH but other NSAIDs do not and opiates don’t do shit. It is not standard of care. And any headache doc I’ve seen, even the poor local one knows opiates have no role in any of the TACs. 


  7. @manishkpratap wow a little protective of your thread. Things tend to go in what ever direction they may here. And I find her experience less hokey than your “cure”. And the “rest of us folks” think your “cure” is just as if not more weird than hers. Judgmental rude people usually don’t do well on public forms. But thanks for letting us see your true colors. 

     

     


  8. 9 hours ago, Jeler said:

    Called and left a message at Neuro just now and asked for MRI/CT Scan and an O2 prescription ! We'll see if they get back to me today!

    Since you’re asking make sure you insist the script has the following:

    1diagnosis w/ code

    2 “oxygen @15-25LPM via NON-REBREATHER mask PRN (as needed)  CH

    3. Please supply Pt w/ M tanks and E tanks

     

    i put in the tank sizes bc some places require that others automatically give M tanks to CH patients and you need a second script for the smaller portable E tanks. You will probably have to buy your own regulators to get above 15LPM but a few places have the higher flow regs. 

     

    Hope this helps, I suggest Apria healthcare. They have been great to me. All CH patients are in an “on call” delivery setup. So you call when you need. I try and give them a day but it has happened that they have come same day. The drivers say the policy is 3M tanks per pt. But I currently have 9. Lol. Every time I called I asked them to put in the notes 4 tanks, then one day they say as usual when hanging up “is there anything else I can do?”  I said yes, could I get 5 tanks?  They put it in the notes and wala I got 5. I call when I get down to 3-4 tanks and reorder 4-5 tanks. If I have half filled tanks or still have a full tank when they come my delivery guys just leave what ever I have left and bring all the new tanks in too. Last week the yard was low on tanks and he only brought 3. Then randomly the door bell rang last night around 7:30pm. It was one of my oxygen guys. He was on call got called out kinda close to my area so he threw 5 more tanks in the truck and brought them over and surprised me!  I’ve had nothing but good things to say about Apria...

    • Like 3

  9. 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?


  10. Hey Mox,

    I think it’s more of a rush for you bc it’s your kink and not so much from the absolute pain. I personally don’t get that kink, it’s almost up there with cutting in my book, but I don’t judge to each is their own. I’ve seen much worse while finally going in to investigate this place called the dungeon or something in NYCs Chelsea district some years back. My favorite coffee house is there and this place always said closed when I walked by. One day it was open, doors letting the fresh air in and curiously worded signs. I walked around and was looking at various toys, tools, and in my mind torture devices. Like “WTF are urethral dilators doing here”. It was an ancient set, made me cringe enough to just want to get the hell out of there. Now there is the kip scale and then there is the PPS. Private Parts Scale...I would imagine that dilator set could yield super kip scale pain if I had to guess.  Just typing it gives me a PPS 1 tingle in my body. Lol. But like I said to each is their own. I imagine along with fecal treats some would even resort to dungeonesk toys as described above if it stopped their CHs. 

    Since it hasn’t been brought up since I’ve been on the boards, I think that a kip 10 ought not have to include thoughts of suicide. Some of us just don’t think that way. I have begged for god (I was a kid) to take me in my sleep when I was burned. But never have I ever had thoughts of suicide. I never feel hopeless, partially due to use of psychedelics and partly because of my amazing support groups (mm,CH, family). However, I do  say holy shit what if my CH stays uncontrolled and Chronic for the rest of my life. And that scares the shit out of me something fierce. However this past week I learned what REM sleep was again =-)  Ah I almost forgot, when I hit K9-10 my adrenalin starts pumping like I’m on an epinephrine drip wide open. Along with that comes endorphins but they don’t touch the pain. It just leaves me with a prolonged feeling like when you almost rear end some one or narrowly avoid a car accident...  Well glade you found a CURE for your CHs. Hehehe

    PFW

    Freud


  11. 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. 


  12. 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. 

    EndNrkY.jpg

    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


  13. Wow @MoxieGirl,

     

    this  works for you all the time?  I don’t see sticking needles through my skin as painful. It’s may be a pinch but short lived and by no means reaches the kip scale?  Is it just seeing it going in/ through that gives you a rush?  Try pushing on your armpit the next time you do the needles may be the two will do wonders. I kid sorry can’t help myself. Hmm so you have 5 needles sticking in your arm when you’re done moxie or you do the same one 5 times?  It’s a hella of a lot cheaper than trex or oxygen. 


  14. Ooo if either of you have never met another Clusterhead I think you two should meet up for sure. I was put in touch w a fellow NJian by DD. He was in a bad place we met, I helped him with busting and we have become good friends.  He is episodic and gets hit every 3 years. I’m chronic but we still suffer the same thing. I think if you have some one close it can make all the difference. For this reason several people have said it’s important to go to a  conference it’s important to meet others that know what you’re going through and have been living w CCH in my case for decades. You never know when you’re going to be at your wits end and another cluster head pops bye and makes your day. Gives you the strength to see beyond this cycle...  my 2 cents...

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