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Showing content with the highest reputation on 04/04/2020 in all areas

  1. 1 point
    Just as some general information, you can use the search bar at the top right of the page to see what others have said related to questions you might have. Occipital nerve block is often abbreviated as ONB, so I would think that if you put that in, or the whole phrase, you'll see some thoughts. My own thought on this (others might disagree) is that if you can get an O2 prescription and quick delivery, that's where you should start, along with jumping on the full D3 regimen at "loading dose" levels and maybe a prednisone taper. Pred will typically stop attacks for a few days, and sometimes will stop a cycle. My only qualification to these suggestions is that if you don't have CH, the oxygen very probably won't help, whereas it might be (I don't know) that the ONB would work for other conditions. Setting up a welding O2 system is pretty straightforward, and we can pretty much walk you through it in addition to the information in the ClusterBuster Files. I don't know whether "industrial gases" (the category that includes O2) are considered essential services and therefore open. I know that there are Airgas offices in MD just outside DC, and also in VA just on the other side of DC. You can get O2 there, if they're open. Then it's just a matter of buying a regulator and a mask online and connecting up your system.
  2. 1 point
    Good morning, A few days ago, CMS relaxed many regulations for COVID crisis, including one related to oxygen. http://go.cms.gov/3aDAFFq National Coverage Determinations (NCDs) and Local Coverage Determinations (LCDs) on Respiratory Related Devices, Oxygen and Oxygen Equipment, Home Infusion Pumps and Home Anticoagulation Therapy: Clinicians now have maximum flexibility in determining patient needs for respiratory related devices and equipment and the flexibility for more patients to manage their treatments at the home. The current NCDs and LCDs that restrict coverage of these devices and services to patients with certain clinical characteristics do not apply during the public health emergency. For example, Medicare will cover non-invasive ventilators, respiratory assist devices and continuous positive airway pressure devices based on the clinician’s assessment of the patient. This is the NCD that we have been fighting against for the past 10 years. This means that we have a window of opportunity to obtain oxygen for cluster headache through Medicare. It was previously not covered by that insurance. We hope that once patients obtain this necessary and life-saving treatment for their cluster headaches, it will not be taken back once the current pandemic crisis is over. Regardless, we believe that a few months with oxygen is better than none. If you have medicare, we are urging you to reach out to your doctor for a prescription today! Even if you are not in cycle now, it will be good to prepare for your next one. The more people who use this unique window of opportunity, the better. Here is prescribing information you can pass on to your doctor if they are unfamiliar with the required high flow rate (at least 12-15lpm) and the protocol needed for cluster headache treatment. There are also other resources and studies here if your doctor would like more information. Also, if you have private insurance or medicaid and have been refused coverage for oxygen in the past, and the CMS determination was sited as a basis for their denial, perhaps it is a good time to try again. You can use the CMS information above if you should need to appeal or justify your request. Even if they haven’t given a reason for denial, it might be a good time to try again. If you are comfortable, please drop us a note at info@clusterbusters.org and let us know your success or failure with this so that we can attempt to track efforts. We are hopeful that this decades-long battle to obtain oxygen for some of the most vulnerable in our population is at an end. It seems a terrible thing that we have to take advantage of this global tragedy, but we also know that clusterheads have been living for far too long with inadequate treatment. We have been ignored and we have lost many along the way due to this ignorance and fear. Our hearts go out to those who have suffered or lost their lives due to Covid-19 as they go out to those suffering with cluster headache, especially during this difficult time. This is the link to the oxygen tri-fold document that is helpful with prescribing information https://drive.google.com/file/d/1Z6tUblQVzzQPPYCOXu_Abn2UqoMZ-rFO/view This link will take you to additional oxygen information: https://clusterbusters.org/resource/helpful-documents-for-printing/ As always, if you have any comments or questions, please feel free to reach out. Sincerely, Eileen Brewer President Clusterbusters
  3. 0 points
    I also tried it but after only 3 days I got terrible depression (which i never ever suffer from) so had to stop. If you can get past that though I've heard some good reports.
  4. 0 points
    I used it for 3-4 weeks, was still ramping up, when severe depression set in. Up to that time it had not helped any.