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ClusterBusters

Freud

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Everything posted by Freud

  1. 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.
  2. Freud

    This helped me- hopefully will help others

    Telling most people here to give up caffeine isn’t an option. They rely on energy drinks and shots to help abort a CH. it doesn’t work for me but helps a lot of people here.
  3. Freud

    Simple Technique to Abort Headaches Right at Onset!

    @SHG do share how do you abort most of your hits in 2-5min other than oxygen or triptans? I’m very curious.
  4. Freud

    Simple Technique to Abort Headaches Right at Onset!

    “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.
  5. Freud

    Simple Technique to Abort Headaches Right at Onset!

    It wasn’t my masterbation project. Reading is fundamental. It was @Elliott‘s project. But I’ll let you protect your thread. And I’ll file your cure with the rest of the “bullshit” as @Potter put it. You really come off as a caring helpful and most of all open minded guy. Looking forward to seeing more of you.
  6. Freud

    This helped me- hopefully will help others

    @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...
  7. Freud

    This helped me- hopefully will help others

    Opiates is not outside the box, it’s outside of standards of Pratice. Any decent headache specialist should know that or neuro or any doctor that takes the time to look up how to help their pt w a rare condition.
  8. @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
  9. Freud

    Simple Technique to Abort Headaches Right at Onset!

    @potter was dead on as usual...
  10. Freud

    Simple Technique to Abort Headaches Right at Onset!

    Well thanks for finally changing the title. I still strongly suggest you read the 27 pages of “Cure”s in the search field before you make another post like this again. Elliot’s posts are a good place to start. You never know. He may still be looking for volunteers for his masterbation study.
  11. Freud

    This helped me- hopefully will help others

    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.
  12. Freud

    Simple Technique to Abort Headaches Right at Onset!

    @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.
  13. 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?
  14. Freud

    Simple Technique to Abort Headaches Right at Onset!

    Good to see ya in the boards @PotterI thoroughly enjoy your posts. Especially the short but sweet ones. Lol will you be in Dallas this year?
  15. Freud

    Simple Technique to Abort Headaches Right at Onset!

    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
  16. 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.
  17. 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
  18. Freud

    Simple Technique to Abort Headaches Right at Onset!

    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.
  19. 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....
  20. 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!
  21. 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?
  22. Oh shit, I was wrong one patient in this last study got AVNOTH. A vascular necrosis of the hip... but these are “high volume”. It’s rare but happens... not something I’d do serially all the time w steroids but a few to squash the beast then the rest of the maintenance doses just numbing agent....
  23. Tada I found it. It’s a case study, I thought it was a more substantial study. None the less this is what my ExCH doc recommended but said if I do it they won’t pay and you’ll have a big bill. So may be you can find a pain doc close to home to do it... https://www.ncbi.nlm.nih.gov/m/pubmed/30144049/
  24. Found this document that reviews a lot of GONB greater occipital nerve block... mainly in migraine but I’m still scanning it to find the CH study. https://www.uhcprovider.com/content/dam/provider/docs/public/policies/comm-medical-drug/occipital-neuralgia-headache-treatment.pdf#page3 Not what I was looking for but may answer your questions if they just do one: https://www.mdedge.com/clinicalneurologynews/article/56433/pain/occipital-nerve-block-cluster-headache-two-thumbs still not what I’m looking for but a good resource scroll down to the chart and you can click the numbers to see the study... https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.12053 BBL when I find the CH one.
  25. So I just got home. Drove dad across NJ all day, threw my M tank in the car and as it happens I was lucky enough to get a migraine last night that’s being a persistent bugger. And the Ch doesn’t scare it away any more they both occur simultaneously. So I haven’t looked up the study yet to give you numbers on avg pain free or reduction of severity time. All I know is if they will do it 3 consecutive days (fairly positive that’s what the study did but I’ll dig it up) you get the best results. The only real side. Effects besides the standard ones for steroids which can rarely include a vascular necrosis of the hip the main risk is balding at the injection site with frequent blocks. The steroid risk is minimized greatly compared to oral or IV doses. I would try it for sure. Everyone responds differently as usual... they did help me though. The first time I went to him to beg for some kind of help, he did the occipital and SPG blocks and it did stop the CH I was having dead in its tracks. Even if they won’t do the consecutive blocks it’s worth a try if it costs you nothing but travel and stuff. I will I’ll do my best to find the study so you’re armed with the info. When is this supposed to happen?
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