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Posts posted by Freud

  1. 6 hours ago, Brain on fire said:

    By all means welcome! I've often seen over 700 users & guests on the forum.

    700! Wow that’s nuts. I’ll have to start checking now that I know it exists.   Interesting find DD, now if we could only get them all to the conference. 

  2. Man I’m so sorry!  I was so shocked when I got my oxygen. I didn’t bother to try getting it despite the first moron I saw writing me an incorrect script with none of the necessary info on it. A year later I saw a well respected CH/ HA doc. He just wiped out this form sent it in and they magically showed up. I went to the ER once to try it before I got it and it did work the time I tried it so I asked for it again. Expecting to have to fight tooth and nail to get it. But they just showed up s week later. I thought for sure my insurance company rejected it but they showed up no call or anything. Others have had an uphill battle no matter who they call. Eventually most find a solution. I think @Into Light has a deal for cash pay with Apria in FL. May be he can shed some light on the subject .

  3. Wow, you’re a baker too?  Jk, one of my delivery guys would never take a tip.  This guy showed up with waiters and a fishing pole And said I’m getting you out of the house!  We’ve been friends ever since.  He would always make sure i has what I needed. He just had a total knee and another guy took over my deliveries. He is super nice as well. I had just got Apria to give me 4 tanks a delivery. The new guy was supper nice too. He left partial tanks for me to use when he brought the new tanks (instead of just swapping them all out). So I started to amass extra tanks. So I started tipping him $10 when he came. He carries a tank upstairs to my bed room and all. If I’m up to it I bring the empties to the front porch to say thank you as well. Then he stopped by when I didn’t order but he was in the neighborhood and bring me extra tanks. I try and have a ten put aside Incase he shows up. Now my insurance co has a contract w Apria. My EOB always says they paid them nothing the some gibberish...per contract...  since the oxygen isn’t costing me a thing I figure $40 a month isn’t bad in tips for all the tanks I have. A small tip goes a long way. Skip baking give em a ten. Unless they are pot brownies and your driver is into that. One driver asked me if I knew about psychedelics and Ch too. Would have been an eye opener if I hadn’t known. 

  4. Try this number up here they don’t list numbers to call the local office here isn’t listed and they don’t give it out. This number is a local NJ number but goes to the national call center. They often won’t give out a price until they have a copy of the script. +1 (732) 905-1400


    let ya know how it goes. My doc had an Apria form he filled out faxed in and a week later oxygen just showed up. They had M tanks and they have told me it’s their policy to give M tanks to cluster patients. Usually 2-3. You need another script to get E tanks for the car. My drivers just give them to me. Apria doesn’t count the tanks according to the guys

    • Like 1
  5. Yea what John said for sure. The delivery guys for Apria here really care and see how much I’m suffering based on how much O2 I’m consuming. Was at 1 M tank a day. Mainly burnt through the tank at night when I’d get hit every 45/60minutes. Take 20-30 min to abort then wash repeat. Now since I get some kind of 2-5hr sleep period. I’m not burning through half as much. In general unless they are dicks the drivers will give out extra tanks. Seems to be a common thread here. I only know one guy who’s O2 guy hates him. Totally due to the fact that he found a place w H tanks. He gets 2 at a time. They are massive!  Guy has to haul it up the porch and up a few stairs. Other than that guy everyone gets incompetent call centers and good service once you get through the red tape w Apria at least. 

  6. Apria does sell to CH patients and I know some one in FL that pays cash. It’s a national company all standards are the same. How many E tanks did they give you?  What number are you calling for Apria. The toll free number for new patients or the local office?  Some times you have to be persistent with them but if you are on the national line just ask to speak to the managers...  there is no way what they told you is true. 

  7. 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?

  8. 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?

  9. It’s unclesr weather histamine is actually a trigger or they are elevated in the blood during an attack as the body responds to the change in physiology: pain triggers  the release of several substances. Histamine is probably released in response to some of these substances. And you end up w a positive feed back cycle until the attack ends.  I found this old gem while searching the web for histamine and CH. JAMA 1971!


    edit: just found this too. It’s many of the substances released during a CH Positive feedback substances

  10. I personally could care less legal, illegal. If it works, it has no to minimal adverse reactions/ is safe then I’m all for it. But drastic lifestyle modifications may work for some, but not me. Food, sex, and sleep are some of life’s simplest pleasures. I’m not willing to give up all three. CH has robbed me of 2/3. I’m glad it works for you and I hope it continues to. 

  11. @SHG I have a carried response to oxygen. Sometimes it works and others it does not. I’ve tried all different breathing techniques and such but the only thing that made a difference was getting 25LPM regulators. My response to psychedelics is varried bc if a med that I was on that is a strong blocker and has a 16.5 month elimination time. My last dose was oct 2018 so I’ve got some time until I can really say they work or don’t work for me. Lately I have gotten a much needed reduction of my nocturnal attacks but I’m dosing every 5-7 days again. Other than not responding to the caffeine/ energy stuff. I’m pretty normal on my responses. 

  12. 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
  13. 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. 

  14.  “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.

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