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Showing content with the highest reputation on 07/20/2018 in Posts

  1. Good evening everyone (well really it's good morning)!! I last shared that I was in the process of being turned down for oxygen by my primary caregiver, and after nearly 5 years of being diagnosed with CH, I was referred to a Neurologist. I just had my appointment earlier today at 11 and.... My doc, James Zhang, asked me a variety of thorough questions related to when they started, the pain level, where the pain is located, triggers, etc. It honestly felt like a drag but I kept hanging on!! Finally, he explained that he is nearly certain that it IS in fact cluster headaches that I am dealing with. He then told me of common treatments for such headaches (Nortriptyline, Amatrex, to name a few), and then he asked if I had ever been given a Calcium channel blocker, and I haven't! So I'll now be taking Verapimil??? soon and see how it works. He also suggested that I should get an MRI just to rule out possible CH mimics, but that's a story for a different time, LOL. I asked him if he had ever heard of oxygen therapy for CH and he told me he had. And then I felt extremely nervous because I didn't want to ask if he'd prescribe me it, assuming he would shut me down as well. HOWEVER, when I got the nerve to ask if I could try it, he happily said that he would write it for me!! And then came the tears- from me and then my mom. <3 <3 <3 Fast forward to me having the script- I drive 30 minutes to an oxygen supplier who tells me that they won't fill my script because insurance won't cover it. UM HELLO MY MOM LITERALLY CALLED OUR INSURANCE THE OTHER DAY TO BE TOLD RATHER QUICKLY THAT IT IS INDEED COVERED. So.... she talks with her manager, and even though it's apparently their company policy to not fill the scripts for CH, her boss decides to give me my Oxygen by having my mom pay totally out of pocket and sending the RX to my insurance with the hopes that they will reimburse my mom at least part of the expense. And I couldn't be any happier! I was only given nasal cannulas for my oxygen and am aware I need a non-rebreather mask. I'm sitting here now recovering from a hard blow of a CH, and staring at my oxygen tanks wishing I could use them. I tried the cannula and the 15 L was so strong it my nose it almost felt like a burning sensation- and definitely didn't help. I need to get a NRB mask ASAP so I'm wondering what is the fastest method of getting one to me? Thank you for taking the time to read this and I hope you have a lovely night!!!
    2 points
  2. There should be a page in the Clusterbuster Files section on the board for O2 use. What I do is a few fast exhales till your squeek - like a breathing test which you likely have never had! Just force out all the air in your lungs. At the end, you will be making a funny sound. Now inhale deeply, hold maybe 3-5 seconds and exhale with force again. Now use your O2 to inhale deeply. Hold, exhale with force. When in pain we tend to hyperventilate so that part will likely come naturally. Just breath faster than normal and much deeper than normal! You are trying to get rid of all the CO2 in your lungs and replace it with O2. Picture that and you have it. Now, a very important part!! When your pain is gone, dial your flow back to match your normal breathing. Then sit and breath O2 at a normal pace for about 5 minutes. Without this 'post hit' breathing, that hit will come right back. With it, you will get your pain free time. Remember, a hit that comes an hour later is not a sign that the O2 is not working. It is a sign that another hit was coming! If I am low on O2, I cut the flow to almost nothing when holding and exhaling to conserve my O2. Turn it back up to inhale. ATB ADD: You can breath in thru your mouth and out thru your nose. With the Cluster mask, you will find that it comes with a breathing tube which allows that perfectly. And then nothing touches your face.
    1 point
  3. Mel You can also look into making this to hold you over. It is the redneck bag. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/
    1 point
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