Sergical81 Posted July 14, 2013 Share Posted July 14, 2013 So I finally got prescribed oxygen but when I look at my prescribtion it reads Oxygen Concentrarion!!! AHHHHH why is this so hard. Is it possible that Doctors around here have not heard of Clusters? Also Im getting hit everyday at 5 am. What will happen if I stay up till 6? Yes Im being serious. Unlike many I only get hit at night in the middle of my cycle. Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 14, 2013 Share Posted July 14, 2013 Did your doc fax the prescription to a specific O2 supplier? If so, it could be that if you contact the supplier and tell them you have CH, maybe they'll know enough to realize what you need. In our case, we sure got more empathetic treatment from the O2 supplier staff than from the doctor. We had to educate the staff, but at least they cared. Quote Link to comment Share on other sites More sharing options...
Sergical81 Posted July 14, 2013 Author Share Posted July 14, 2013 No one around here knows bout clusters. Not even Doctors. They give me the "its just a headache look". "They say oh yeah migraines". Quote Link to comment Share on other sites More sharing options...
spiny Posted July 15, 2013 Share Posted July 15, 2013 Yes, they can all be idiots. My neuro won't prescribe due to expense he says!!! BS. That is my decision. He is a specialist and worries about toxicity and rebounds. Dumb and refuses to read anything I offer to print out for him. BTW, many cannot get O2 because of Medicare. Can you believe that one????? Yes, you can stay up until 6 and then hit the sack. Likely you will sleep for 2-3 hours and feel like a champ. On the other hand, many say 'Don't nap, it will cause a hit.' Since my hits are at night, the only time I can sleep is 6-8 am and 1-2 pm. If I am lucky and someone does not disturb this schedule, I sort of get by with 2-3 hours of sleep for months. I would try it. Also, I would sleep sitting up in a recliner or resting my head on a table with pillows. It really does help, along with Melatonin (30mg) at night. I still get hit, but not so hard and I do sleep after 6am. Good luck and hope this helps! spiny Quote Link to comment Share on other sites More sharing options...
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