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Showing content with the highest reputation on 06/09/2020 in all areas

  1. As far as I know all you need is the prescription. That could come from either of the 2 doctors, then you can call around to local O2 suppliers and work out the rest with them. I would not get to hung up on the flow rate of the regulators they give you because most likely you will want to buy your own, same goes for the mask. I found it much easier to make the calls to the oxygen providers myself, tell them what I wanted and what I need the doctor to send them and them call the doctor and tell them what to write on the script. It is a pain in the ass and yes you are doing someone else job but that is the only way you will get what you need. here are links to the regulators and mask most of us use. If you are comfortable giving your general location im sure we have members on this site that may know of a good oxygen supplier that can deliver to your home. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
    3 points
  2. You are getting the run around. Clearly your neurologist is either disinterested or not competent to take care of cluster headaches. Yes, your primary can prescribe oxygen as your neurologist can. If you are in the US any licensed physician can prescribe. It is possible the O2 home suppliers are difficult to work with and that is why the neurologists office is punting. Its more likely the neurologist office isn't familiar with the process. Depending where you live it might be worth a call to a pulmonoligist office and talk to the nurses (they do the orders anyway) and ask for advice regarding getting O2. Imitrex can be helpful but also can cause rebounds. Using smaller doses of 2 mg from a multi dose vial works great and limits side effects. Prefilled injectors can be broken down to use smaller doses with an insulin syringe. O2 is a godsend and you should figure out how to have available. You might consider the D3 regimen also. C19 has changed the world and medical care is strongly affected. Telemedicine is ideal for established cluster patients but providers are still working out how to use it. In the end you need a provider who listens, is willing to look things up and will prescribe what you need.
    3 points
  3. FT makes a good point. When I had insurance years ago, I paid a copay of $15 per E tank. When I lost my insurance the Oxygen company charged me $8.10 per exchange... Had I known not having insurance was cheaper, I wouldn't have fooled with insurance to start with. J
    1 point
  4. When calling around for oxygen make sure to ask for pricing with and without insurance. I was told it would be over $200 a month for up to 3 deliveries with my insurance. I told them I want to pay out of pocket and it went down to just under $100 a month. You will want more then one tank and even a few different sizes. E tanks are a good size to keep in your car and at work is you can. M60 tanks are about twice that size and are good for home use. a M60 tank is about twice the size of a M60 and is even better for home use but is a little heave to lug up stairs but is worth it is you can manage to get one. After you have your company set up and a few tanks we can help you with ways to grow your collection so you will be sure to have enough tanks to cover you when things get bad and you are using it a lot.
    1 point
  5. I got a script for oxygen from my primary care doctor to a medical supply company. Getting the script wasn’t so much the problem as it was finding a place that actually delivered. Also, getting insurance to cover it is a pain in the you know what. My doctor wrote the script for an O2 tank for cluster headaches. Insurance says they won’t cover it bc headaches aren’t life threatening. I pay $78 per tank out of pocket. I hope you find some relief soon
    1 point
  6. Very good advice and observations from the other posters, Cap'. But who knows whether your primary doc will actually prescribe O2--it would be rare if s/he does, and doesn't just bump you back to the idiot neuro. As F'T' said, all you need is the prescription. You need to be ready to be persuasively insistent with the primary, or when you go back to the neuro. Or find someone else. Be aware that you can quickly set up an O2 system using welding O2, as many people do. Imitrex ain't great for you, for sure, but he just told you to stop--no more prescriptions? So what are you supposed to be on now--Some Verap (which won't take effect for at least a week), any leftover Trex, and some magnesium (might help) and B-2 (might help). This post will give you some info about all these things and some other stuff that might be helpful: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    1 point
  7. Hi michq, ...all the good stuff above!... ....fever and headache two of Covid symptoms...so wise to test...assuming you were negative... ...body temp regulated by the hypothalamus, a wonky one thought to be the center of CH issues, but i do not recall anyone reporting fever..... buckets of sweat yes ....has an MRI/CT scan been proposed?....often used to rule out other issues mimicking CH... ....CHf list took me down memory lane.....have had all but one of those symptoms but initially only 1 for the first yr...the diary idea is really great... ...the advice re a headache specialist really important if this continues....the tylenol #3 a red flag UNLESS the doc is using as diagnostic tool (if it works unlikely to be CH)... best jonathan
    1 point
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