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Everything posted by TheVerbalArchitect

  1. Yeah so far its great,just having it around does seem to scare em off sometimes. The V.A.
  2. 8 LPM , so far it seems to be aborting,no attacks since I got the O2. RC seed dosing might be helping too. I am no longer on any other medications The V.A.
  3. Six E-tanks up in my hizouse! Boo Ya Ka! You guys are great! The V.A.
  4. I already faxed in the articles today,I hope that didn't piss em off to the point where they wont prescribe it Im calling the supplier tomm to see if it all went through. Peace The V.A.
  5. Yay today I got to talk to the crazy nurse! What happened to the nice one from yesterday! I told the nurse today I need 15 LPM,she said "No!" .7 LPM is already a lot she said,refused to listen to me,so I said give me your fax number so i can show you documents stating why I should be on 15 LPM. Another frustrating day Thanks Guys The V.A.
  6. Cool guys, I will make the call tomorrow.
  7. The nurse called back,she is the first nurse I have talked to that has taken me seriously. My neurologist still wanted me to do one more trail but the nurse insisted and made the O2 order! Only problem is it will be 7 lpm. Will I need to get a diff valve? I know I need at least 15 lpm. Me happy The V.A.
  8. CH Father ,I took no offense to any of your posts You and everyone else here has been a great help to me and others. I called my nurse this morning and she said I had to come in for ANOTHER trail! I kept my cool and told her how concerned I was with everything,she said she would see if my neurologist would start me on O2 therapy at home A.S.A.P. .Waiting on their call now. I'm sure she will just call back and say I need to come in for another trail but I WILL be calling in everyday until its resolved. If nothing can be done I will be going to another doc or going to a local supplier. Most days I'm stuck bed with clusters,no motivation, don't feel like dealing with all the B.S. . My mom has always been in the mix and it drives her crazy. I called her yesterday and told her how badly i needed the O2.She is on board to get it for me by any means possible. Thanks to everyone,for everything, priceless. I know it doesn't seem like I have much control over my situation yet but having a place to go like this brings my spirits up. Yes my days are still filled with attacks but you guys give me the motivation to keep on truckin. Thank You! And to Agent Orange, the texts and phone calls have been great. You are one of the many on here that will do anything to help others. Dedicated 110% to help. Till next time The V.A.
  9. I will be making a few calls tomm. I will do what I can.I have been trying to be as aggressive as I can without pissing my docs off to the point where they wont help at all. I have done a lot of reading on diff. doses. I plan on going higher,just trying to work my way up slowly. Sorry I cant type more not feeling well
  10. K thanks AO, I will wait a couple of days for my next dose. The V.A.
  11. Did my o2 trail that they wanted me to do on Friday,now I'm just waiting for my appointment on the 15th of next month.I'm hoping to god they prescribe it to me.I'm bringing the articles in when I go. Doing my second dose of R.C. tonight (40) seeds. Attacks have been frequent (3-4) a day plus a beasts every night. Just gonna hang in there for now. One Love The V.A.
  12. CH Father, I also thought today would be the day.
  13. Brew,wasn't under that impression, I know it can take many doses Went in this mourning to do my o2 "trail" worked on my attack. Now gotta wait and see. "Are your hopes for getting O2 from other sources fading" No, I just thought I would go along with getting o2 from my neuro first,now that the "trail" is out of the way they should get rollin on getting me my o2. I still have to wait two weeks though till my next appointment,on the 15th of Feb. To see my neuro. I will continue dosing on seeds and the usual Red Bull,planning on trying Fun Guy in a month if the seeds have no effect. Wish me luck The V.A.
  14. 3 attacks yesterday,took my first dose of R.C. seeds (25) yesterday evening,soaked them in water/lemon juice for four hours after mortar and pestle.Spent all day yesterday talking to nurses,got a call back from my primary saying they want me to do o2 "trails" drive 20 mins to their office when I feel one coming.They said they are not sure if o2 will work for me so they want me to do these "trails".Im confused and frustrated at this point,why cant they just prescribe me o2? The V.A.
  15. Another thing I would like to add, back when my clusters first started and docs were telling me sinus infection I was using way too much Afrin. My nose would plug before attacks and I would use Afrin because nothing else worked. Overuse of Afrin type nose sprays can destroy your nose. Some days I think maybe that is why I get so much burning while I breath,not sure,just thought I would throw that out there. The V.A.
  16. I get this too, my nose is almost always stuffy,usually on my cluster side (Left). When its not stuffy its runny and when I breath it burns.I eat lots and lots sometimes (when I can) and have a hard time gaining weight too,it could be due to high metabolism Tingeling. When I'm in my cycle which is always,I have a hard time eating,no appetite or I have nausea. The V.A.
  17. Attack today at 4,only lasted 45 mins but I'm still hungover from it. Feel like I took a ride in a tornado.
  18. I smoked mary since I was 17.Slowed down four years ago when the Chs started (22) . I still do it every now and then for my CH hangovers but from what most people say it can be a major CH trigger, so I try and stay away from it now.I have been thinking though,could long term Mary use in the past be the cause for CHs in some people? it has crossed my mind. Everyone is different. I wouldn't start the Mary again,maybe try other sleep aids like Melatonin. everyone on here will tell you to snatch up some O2,I'm sure you know that though Look into Yoga classes, acupressure, and other forms of stretching/exercise. Triptans for me cause major rebounds but that's just me. Hope that helps some The V.A.
  19. Interesting article, I get floaters most times if I use an abortive. Almost like it puts on cap on the pain but you know its still there.Still all other symptoms occur but with a lot less pain. Ill get the floaters for like a strait week, very intense floaters though and i get them all day,not just when I'm tired or sleepy. Any of my pain free days usually contain floaters.I know its nothing to worry about but its and interesting topic and VERY annoying . The V.A.
  20. I got my R.C.s from Iamshaman.com , for 100 seeds it was around 17$ after shipping,ill let you know how they work when I get them. The V.A.
  21. Anudda ting, sometimes when im not getting attacks I get what some have called a silent attack A.K.A. constant floaters on my cluster side. Anyone else have this? back when my clusters started when I wasn't yet diagnosed (Recently diagnosed by neuro 3 months ago but I have had them for 4 years miss-diagnosed ) I had my eyes checked but they were fine. Just wondering The V.A.
  22. Hmmm,I have some in the bathroom, I just don't use it all the time.Didnt know it worked for that kinda thing. Tonight I will try the melatonin. Thanks Mane The V.A.
  23. Very glad to be back,you guys make me feel right at home STILL have not got my RCs,should get them today,detoxing with coffee,Red Bulls,Vitamin water (LOTS). Shadows are constant. No beast last night,thank god.But the two nights before I awoke with beasts in the night. AO suggested I lay cluster side up when I feel pressure, I slept like that last night (maybe prevented the beast,not sure). As far as O2 goes I know excactly what I need thanks to you guys,like I said should be getting my 02 stuff on friday but not 100% positive. My girlfreinds aunts (twins) are both paramedics they have both also been a great help with getting me set up and being there for me. Hope everyone is is doing ok this morning The V.A.
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