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zgreek

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zgreek last won the day on September 2 2018

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About zgreek

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  1. zgreek

    Oxygen Mask question

    To CHF, a 6' hose comes with the demand valve. I use the CB mask, without the bag, O2 flows only when you inhale. I also use a welding regulator (this can be opened to well past 40 LPM), I don't know my liters per minute, the regulator reads in PSI, when using the non demand valve set up, I opened the valve enough to fill the bag and keep it filled. With the demand valve I open the regulator enough to take in whatever amount of O2 I desire, again only when I inhale. Here's a pic of how I use the Demand Valve. bb1283, don't know which it is, maybe Racer1_NC will chime in, he's well versed in this.
  2. zgreek

    Oxygen Mask question

    Sorry for the mistake CHF, I just went online and typed in Dan in the address search/address bar, and got https://www.diversalertnetwork.org/dive-store/?. DAN DIVERS ALERT NETWORK I believe I had to use the sku # 611-3000 in the search, let me know how it goes.
  3. zgreek

    Oxygen Mask question

    Hey bb1283, I purchased a demand valve last year after the CB Conf., on the recommendation of another clusterhead. It works really well, and saves a lot of O2. https://www.diversalertnetwork.org/dive-store/?id=39 . I paid $205 last year, last week it was $192. Description: DAN Demand Valve w/6-foot hose sku is 611-3000. Good Luck
  4. Thanks Swiftlaw, I too have tried it all, with very little success ( except for the wonder drug imitrex, which I robustly abused ). Your story of CBD oil is fascinating, could it be that simple? I hope so, I bust now and it takes planning and work. Freud, I went on the Lazarus website, just to make sure.. You are referring to the "Flavorless High Potency Tincture"? Thanks guys, the more ammo I carry, the better to fight the beast.
  5. zgreek

    Newbie

    Hey there bbb, the short answer to your question about hangovers from CH.... ABSOLUTELY. You don't mention what pharma your taking, in my experience, if you are trying to "tough it out" with nothing, experiencing a KIP 8-10 CH, my cognitive processes were shot, I felt awful (hungover) and it would last for hours. My neuro's explanation was... chemicals in the brain are released during CH, this is the hangover. For me imitrex injections worked GREAT, abort the CH and no CH hangover. There's a lot written on this site about triptans. I keep them close, but now, with busting, O2, D3, they don't get used very often.
  6. zgreek

    Doctor-Patient Relationships

    1. Knowledgeable, compassionate, willing to listen to me. Has the office treat CH with urgency. 2. Been with my neuro. for 32 years, I have been fortunate.
  7. zgreek

    Cycle change and High D levels

    Hey fiftyamp, in response to your question about becoming chronic, with the start of a new cycle preceding one just finished, I feel your anxiety and pain. This is something that happened to me for 5 consecutive years, in the fifth year I 3peated my cycles. I was at a loss, didn't know what to do. I found this community of knowledgeable and caring people. Through much trial and error(and pain) I managed to limit my cycle in that sixth year to just once and go from 16 weeks to 11. The one thing I've learned about CH is that what happens in your past cycles does not always hold true for future cycles. As many here will tell you, things change, meds stop working, time of hits change, quality and quantity of hits change, its a real bitch. Don't throw in the towel about becoming chronic, remind yourself that in just a few weeks it could be over. If you have kept your vitamin M frozen, I what use them. If it has not already been mentioned, you can order LSA seeds, same concept as vit M without the trip. Hang tough
  8. zgreek

    MASSIVE APPOLOGY

    Thanks for the fix, I need my fix of CB Forums
  9. I was at my neuro's office on Thursday, the gammacore representative was there to demonstrate the device and answer questions for the doc's, I sat in. I'm not sure the positives for the device outweigh the negatives, but the fact that something new can be added to our arsenal of weapons to fight the beast has to be a good thing. I tried it, feels like small electrical pulse on your neck, while that is going on, the corner of your mouth droops a little. Positives: 1. Portable, looks like a 2 headed electric razor, sounds like it also. 2. No evasive surgical implant. 3. No side effects (droopy mouth, stops when turned off) 4. No problem with TSA. 5. Shelf life is 18 months, if not turned on, not sure how long it is if turned on. Negatives: 1. Cost, $575, about 300 "doses" (if it is used up before 30 days, you can a "refill" for free), since this is new to USA, the manufacturer is offering $100 off, and I believe the rep. said the first 2 months are free if you are in the registry. 2. It works only for episodics, and only 47% of the CHer's tested (aborting the CH). There was no data on whether it helped the other 53%, they only measured aborting the CH. The ultimate goal is to expand it to work with migraine patients. They base the usage on a 30 calendar, once you turn it on, they start counting. Their representatives with be in Chicago for our conference in Sept. They are looking for approval for the 2nd generation model, which looks like a cell phone, and has a shelf life of 5 years, The rep. did not know that cost. I hope I remembered this correctly, a lot was going on. I know this does not answer all the questions.
  10. zgreek

    Pain level scale

    John2000, I have to agree with jon019, If you think the CH is 8, it is a Freaking 8! I used to feel the same as you, and downgrade the pain, and myself. At that time I did not know anyone else with this bitch of a problem, my neuro thought I was nuts (maybe), that I do have a high tolerance for pain(don't think so), simply by the fact that I am still standing after 45 years of this S--t. Over the last 20 plus years of using 100's of Imitrex inj's, and mountains of Verp, I started to forget about the 8's and 9's. Then I had that late warning, that I ignored, now I know I will never forget, an 8 is an 8. I believe we should call CH by their real name,Trigeminal Autonomic Cefilalgia (sp). The word headache just is not powerful enough.
  11. zgreek

    Rookie at Busting

    Thanks everyone for the advice, it finally happened yesterday, I got O2, it was not easy. Chfather, I used the brother-in-law story, and it worked out fine. I started D3 a few days ago and without getting to far ahead of my self, I believe I feel better, I'll know more in a few weeks. I went to my Neuro. 3 weeks ago for the O2, and to inform him that I was busting. He is completely on board, and wants updates, he may come to Chicago next Sept. Thanks again, I hope in my next post I can report PF, or close to it.
  12. zgreek

    Rookie at Busting

    Thanks CH father, called Airgas today. I will take care of this tomorrow. After this years conference I picked a reg. and bought the CB mask, just need O2.
  13. zgreek

    Rookie at Busting

    Just an up date to my first experience busting,with Vit M (9 times, every 5 days), it has been 5 1/2 weeks since this cycle started. I was using small doses of Verp. for the first 2 weeks, have since stopped completely, no Imitrex either. I have had about 30 HA, ranging from 1 to 5 kip, has not always been easy. The duration, strength, and number of HA's has dramatically improved. Still trying to put together several PF days in a row. I have had a script for O2 for 3 weeks and the amount BS I have dealt with between the Doc's office, insurance co. and the O2 provider is overwhelming (the O2 provider now says I need to participate in a clinical trial before they will work with me). I going to get welding O2. I also started the D3 Reg. today. If I am asked why I am renting the O2, dumb question, Am I welding? Should I continue busting every 5 days till the CH is gone? Any and all advice is welcome.
  14. zgreek

    Pre-planned Legal fight ?

    Just today I was speaking to a V.P. of Business Development for hospital chain here in CA. She is a friend. She related a story of a neurologist she knows personally who is in jail now for "advising" and or helping a cluster patient obtain our special medication. I believe that this is a "crapshoot". Just hope THEY understand that this IS medication.
  15. zgreek

    Rookie at Busting

    Thanks for the info, I am still getting hit, the intensity is less, I will dose every five days till gone.
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