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Everything posted by Mel98

  1. Hey all! I recently got into the oxygen world of Cluster headaches and still have a lot to learn. I was given two E tanks about two weeks ago now, and they're both almost empty. I'm looking into getting an MM/H tank (the biggest tank) for home use! The only issue is that I'm trying to find the correct regulator size for that type of tank and I've had no luck. I need something that will go up to 25lpm, as I've noticed the reservoir bag isn't filling up as fast I need it to when I'm hyperventilating into the non-rebreather mask. I'm trying to see if I can purchase mine online for cheaper since my regulator for my E tanks cost us $220!!! It was pretty shitty to look up the EXACT SAME REGULATOR LATER ON AMAZON FOR $20!!!! Another thing- my mom has concerns for bacteria control/growth when it comes to my mask. I purchased mine from clusterheadaches.com and I guess I'm wondering if there's a way to clean it to prevent the growth of mold or any other types of bacteria? It kinda scares me to think about!! Lol Thanks for all of your help so far! Melanie V
  2. Great! When it comes to having the mask or just using the cannula tube, how should my breathing be? I've read I should be hyperventilating but I want to make sure I do it correctly when it comes to when to breathe in and out from my nose/mouth. Thank you so much for your input!
  3. Thank you very much! If you yourself purchased this mask from this website, how long did it take to deliver to your house?
  4. I tried Monster energy, which I know isn't the same, but I have a naturally high-resting heartrate and am kind of weary about taking energy shots! Haha, weird for a young woman- but my doctor isn't concerned enough with it. Mostly my mother who is! lol
  5. 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!!!
  6. The place I went to today is actually a clinic my hospital offers and is free through my mom's insurance. I spoke with a nurse practitioner who has spoken with my own doctor before about my CH. So no, I didn't speak with my actual doctor today, but as soon as I mentioned 02 to the NP, she shot it down saying my dr wouldn't sign for it. She said that the neurologist should call me within a week. I annoyingly asked her what I can do for now for the pain, and she suggested Excedrin Migraine (which I have used in the past, but it gives me rebound headaches) as well as taking 5-10 mg of Melatonin every night. She wrote me no prescription today, not even Nortriptyline!! I was shocked about that, actually. This whole process has been so frustrating, and I just wish the medical professionals would actually understand. I'm wondering if once I meet with the Neurologist if I'll be given a CT/MRI, but I'm not sure if that would show anything. I will definitely try the energy shots and the ice water! What sucks most I think is when they wake me up out of a dead sleep. Those times are the worst. This past week has actually made me afraid to sleep, knowing what lies ahead of me at 2 AM. Hoping for the best with the melatonin tonight, though! Thank you so incredibly much for responding to me. It's truly given me some hope, and I definitely needed it. Wishing the best for you! And me! lol
  7. I walked right in, told her my headaches were back and then I mentioned the oxygen, to which she dismissed right away. She claims that my insurance doesn't cover it, and although my mom is more than willing to pay in full, that they aren't able to fill the prescription unless insurance covers part of it? I was crying the in the office, feeling extremely hopeless. I told my mom who called my insurance immediately- they DO cover oxygen therapy specifically for cluster headaches! My conclusion? My doctor is a bitch- a clueless one at that. Hopefully this is a step in the right direction for me! My doctor has referred me to a neurologist as well.
  8. Thank you so much! And mel is short for melanie- aka I’m a woman but that’s ok! I should have specified lol! I’m in my dr’s office right now, papers in hand. I just hope she will approve the prescription!!
  9. Hey, all! I’m mel and I’ve been a cluster headache sufferer for about 5 years now. I’m probably a young one in here- nearing 20 in August! the past month or so has been...hell to say the least. It seems I get at least 1-2 clusters a day now and with it being so humid outside, it only intensifies. Currently I am in no sort of meds because they just picked back up. Nortriptyline made me gain a lot of weight, and my preventative gave me rebound headaches. I feel as though I’m at a loss. I’m just now recovering from one at the moment, and am just exhausted. My mom has pegged my doctor about prescribing me oxygen, as she’s heard it’s been successful with clusters. Does anyone have experience with oxygen therapy for the headaches? I’d love to her your personal take on it. Luckily, I have an appointment with my doctor today at 3 pm, hoping for the best! -Mel
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