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Everything posted by Freud

  1. @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...
  2. 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.
  3. @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
  4. 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.
  5. 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.
  6. @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.
  7. 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...
  8. 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?
  9. 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?
  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. I’m 16.36 hrs away what time are reservations?
  12. 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.
  13. 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
  14. 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.
  15. 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....
  16. 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...
  17. And none of us mentioned everyone with CH or a look alike (they all fall in a constellation of disorders called TACs triginal nerve autonomic cephalgias) you should have your noggin scanned to rule out a treatable aneurysm....
  18. I forgot to mention if you do get sumatriptan injections ask to get the 6mg/ injection auto injectors. You can take them apart and get 2-3 doses out of each. This way you would double to triple the amount of injections you get. I can walk you through this and steer you to some YouTube videos if you get them.
  19. Hi Jeler, welcome to the board, sorry you have to be here. A few things: Firstly your neuro should have prescribed 2 things. One, high flow Oxygen Via a NON-REBREATHER mask @ a minimum of 15-25LPM. Most of us prefer/ require 25LPM. This usually requires you to buy your own regulator. Oxygen typically aborts a CH in 5-15min. You stay on it for an extra ten min or so once the CH aborts. If you don’t have insurance there are other options like welding oxygen setup and you buy your own regulator. Regulator you’d need click on the 0-25LPM choice then you buy the CH (cluster headache) mask setup Cluster mask O2 kit w mouth piece If you do get oxygen from a medical prescriber you want to make sure the supplier you use has M tanks and E tanks. I keep a big M tank next to my bed, one down stairs. And now one in my car. If there isn’t room in the car for the big M tank I take several E tanks w me. I suffered with out oxygen for the first year I had CH. I’m chronic CH so it started about 2 years ago and I don’t get cycles it’s an every day thing... I can’t say enough about oxygen! Secondly, sumatriptan injections not pills to abort the really really bad attacks. Sumatriptan if over used can increase intensity and duration of cycles if you’re episodic. I use mine sparingly. You only get 10-16 a month and I get 200+ CH a month. I save them for when I have something important to do and I can’t bring my oxygen w me. They usually work in ten min or less. Rarely as much as 15-20min for the real bad kip 9-10s (look up KIP pain scale for CH). PSA over :-). Now getting to your current treatment plan. Some people do respond to verapamil like it’s a miracle drug but not most. However you’re dose should be titrated every 7-10days by 80mg increases. Most people that find relief w verapamil need doses as high as 900+mg/day. The immediate release has been shown to be more effective than the sustained release form. You should at a minimum have an EKG done every time they increase your dose to make sure you don’t get heart block. I strongly suggest getting a cardiologist to follow you and make an appointment for a blood pressure check and EKGs. I was on as much as 800mg a day (couldn’t tolerate more, got blurry vision), did that for a year, wasn’t helping, I developed CCB (calcium channel blocker) related peripheral edema. It was significant, put the water in slowly over time couldn’t figure out why I was gaining so much weight. Then all of a sudden I woke up and my legs were huge w edema like a heart failure patient (I’m. Cardiac surgery Physician assistant). I halved my dose, called my cardiologist with my self diagnosis and he agreed time to stop completely. Since I came off a few weeks ago I lost 13 Lbs of water! I still recommend trying it but you can’t give up until you’ve gotten to higher doses. MUST have your EKG and BP followed! Steroid tapers can work for some. Some people get a break and the CH comes back as soon as taper is stopped, others can abort a cycle. Steroids should not be used long term, and they are not benign. Several members here have gotten AVOTH (avascular necrosis of the hip) femoral head dies from lack of blood supply over a period of time and necessitates a hip replacement. It is very rare but does happen. Besides professional help, although many headache centers and docs support what we do here. This site was created to educate and advocate for “Busting”. Please click on the new user blue button on the top of the page. Read everything! Then make a post on any of the private boards, usually theories and implementation... we don’t discuss busting much on the public board. There are other tips and tricks like energy drinks or shots. They don’t work for me but others swear by it. If you want a good laugh search this site for “cure” and look through the 27 pages of results. I started w the oldest post first and went from there. People have tried almost everything you can think of like drinking their own urine to hot pepper sprays in the nose and a lot of others. But I can say this for certain this site and busting has saved lives, gives people hope (you’re not alone) May think about attending the national conference in Dallas this sept 19-22. There will be a lot of survivors there some with 20-40+ year histories! And lastly there is @Batch‘s Vitamin D protocol w cofactors. He has stated it can be just as effective as busting (helps about 80% of us I think) it does require some lab tests your primary or neuro need to order)but I’m sure he will chime in and make suggestions. I’m sure I’ve left something off but this is a good place to start. Please click on that blue button and dive in head first. Looking forward to hearing more of your story and questions. Pain in free wishes (PFW) Brian
  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/
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