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ClusterBusters

jfrillin

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  1. jfrillin

    Emgality Shot for Episodic Clusters

    Thank you all for your feedback. From the responses i got i am not feeling very optimistic anymore. I was very excited when i saw the news release about it. I thought to myself....FINALLY!! I have a husand & daughter that deals with this nightmare. Now, i feel like the bubble has burst yet again.
  2. jfrillin

    New Here

    My husband has had CH for 5+ years. Took 2 years to be "officially" diagnosed. I have done a lot of research on my own because the Neurologist / headache specialist has only presribed Imitrex for him. Hardly mentioned O2. After reviewing Oxygen therapy on this website and what exactly you need to effectively abort an attack....it has (so far) been doing the job. We have the big tanks M90 of O2, and more then two to get us through. We have a 15 lpm regulator and found that what all the research say's that 25 lpm works better at aborting an attack with uninterrupted flow does make a big difference !!!! However, our O2 provider does not provide a 0-25 lpm regulator. So to answer your question....so far the O2 has been doing it's job. We understand what you are going through....it is HELL for a loved one to watch their family member go through this and you feel very helpless. All you want to do is take their pain away and you can't.
  3. jfrillin

    0-25 Regulator and Demand Valve

    Thank you for the links to both Harbor Freight and Amazon. You hit the nail on the head with why we need the higher lpm.... waiting on the bag every time to fill takes much too long when you are in the middle of an attack. Our Oxygen supplier doesn't even carry anything higher then 15 lpm and looked at us like we had two heads when we asked if they had a regulator that went to 25. I really appreciate all the information and resources you have provided ! Without nice people like yourself that understand what it is like to be in ours shoes, we would be shooting in the dark. It is so wonderful to have this website. It has been a huge life saver for us !!!! Nobody understands what is like to have cluster headaches or a family member with it. Trying to explain to my boss at work what CH...she just relates to it as a Migraine. No clue. People think you are exaggerating or it isn't as bad as you say. You feel like nobody understands. If they could come here and watch my husband in an attack...maybe they would think differently. I had to actually tape him going through an attack in order to show my boss what it is like and the magnitude of the pain.
  4. Can someone please tell me where I can order on-line a 0-25 lpm regulator and a demand valve?? I have searched the links listed on this website and was unsucessfull.
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