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Showing content with the highest reputation on 01/23/2023 in all areas

  1. Hi Rachel! Your PCP is absolutely wrong. What they probably mean is that it’s very hard to get insurance to cover it. They can very easily write a script and fax it over to a medical supply facility. You may just need to be a self pay patient. That’s how I do it.
    5 points
  2. Lots of people do it this way -- no prescription required: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ Your PCP is probably wrong . . . For a long time, Medicaid didn't cover O2 for cluster headaches, but now it does, or at least it can. This is a little complicated -- regional Medicare/Medicaid centers are allowed to determine whether or not O2 is covered for CH in their regions. And of course, you'd need a prescription. Welding O2, as discussed in that link, works fine, with no prescription needed. Since you are new to CH (we don't actually think there is such a thing as "cluster migraines," except maybe for a very, very small percentage of people), you might look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    4 points
  3. if you can get the prescription you can call all the oxygen supply houses in your area and tell them you have no insurance and will self pay. It turned out to cost me less money doing it this way. you do not need anything other that the full tanks from them as you will want to buy your own high flow regulators online and a cluster mask that allows more 02 intake and no outside air.
    2 points
  4. I've not been in cycle for a few years now and O2 is my primary abortive when I am. I have not used a triptan in very, very long time, but I still carry one in my pocket everywhere. I will not be caught out and get slapped around again. They have a place in our treatment plan but IMHO they should not be a primary abortive. The more you use them, the more you need to use them. People may deny that, but they are only fooling themselves.
    2 points
  5. Jobo have hit the nail on the head as far as triptans are concerned. They have there place in are God forsaken world , but God so easy to over use because they are right there and can give such great relief in minutes , but over use means prolonged cycle rebound attacks simple as that .Been there done it !!!!!!! Not a good place to be . I jabbed at every sign of an attack a few years ago,I just didn't want to face the pain , I had o2 but didn't really know how to use it . I found this forum a few years ago know ,I've learnt so much . I'm off the triptans just like @BoscoPikoand have learnt how to manage my CH. Again just like bosco I do carry a triptan around with me when I'm out and about if I'm in cycle .Don't want to be thrashing about on the floor bang my head on the ground ,Will end up in a straight jacket (again)
    2 points
  6. ... yeah.... he's wrong! .... crap like that is what makes FB such a dangerous minefield for clusterheads... mixed in with that absolutely essential care, compassion and vital info is stuff like this that does a disservice.... especially to the folks new to CH and those w/o the time, desire, ability, means or motivation to go in depth. i mean no disparagement to the many good folk on the many sites... and i'm there too.... but the info is just so scattershot and unreliable it's scary.... with much difficulty checking the bona fides of the poster or researching a topic.... ... the pioneers of busting figured a better way.... the info is right here.... and the Yales and Harvards of the world are finally getting on board.... .... if the anecdotal reports from thousands of clusterheads on the dangers and consequences of overuse (even "proper" use) of triptans isn't enough.... it's right in the medical literature and on the dang label/insert of the script!
    2 points
  7. I so appreciate being able to come on here and talk through any concerns I’m having with my CH. it’s much easier than talking to family. My trip to Puerto Rico is 5 weeks away, and I wanted to go over my plan with you all to see if there is anything I should add, avoid, or improve. 2 weeks before my trip I plan on busting with MM at least twice. I also talked to my doctor about increasing my verapamil slightly. He told me it would be fine for the trip, since my blood pressure is good. He thinks I’m on too low of a dose anyway. I am on 80mg 3x per day currently. I do not have a way to get oxygen on the plane or at my destination; so I will have to do without. I am planning on loading on D3 and the cofactors a week before the trip. As for MM, a SPUT will be taken on the runway as well. I will be plenty hydrated and I’ll buy some Red Bulls before hand. I expressed to my doctor that my concern wasn’t so much getting hit on the plane (although that would SUCK), but mostly having multiple hits while on my vacation. He gave me a steroid taper he said I should take if I start to experience hits while over there. He also told me that could help with the flight back as well to avoid a hit. He also prescribed Xanax and Valium for the flight because he said any high stress leading to the morning of the flight would likely trigger an attack. Any thoughts here? The only nasal spray I have is the ergotamine. Much love to you all. My hope is I am pain free and I can start traveling and enjoying life again.
    1 point
  8. ....yup, same for me over the years about half the time because some insurance providers covered and some didn't. some O2 shops are stubborn about this and you may need to shop around....go talk to them in person so you are a face and not a phone call. funny (not ha ha) turned out that self pay or ins copay was exact same $ out of pocket. still, there are advantages to being covered, as it means your diagnosis is more recognized in the system (insurance and O2 shops) and that could be important down the line. i'd start out self pay then work toward coverage. an advocate doc (find a headache specialist if at all possible) in the process can be critical, as a "letter of medical necessity" can (and did for me) change denials. and always, ALWAYS, ALWAYS APPEAL any denial from an insurance company...always seemed to me that the first denial was automatic and they were hoping you would just go away... DON'T. and besides the doctors note, provide any documentation of medical lit/research supporting your claim (e.g. oxygen along with triptans is medically recognized as THE primary abortives(s) for CH).... and besides, O2 is WAY cheaper than triptans, w/o the rebounds and nasty side effects......
    1 point
  9. Ok Jeeb.. This bit reminded me of pulling a shaunjeeber! This too has happened to me bud. After all was said and done I strangely got kudos for sealing a deal that I remembered noda about. Was later told that I spoke to the trades involved in the project along with current economic escalation impact.. Maybe God has a soft spot for us.. I sure like to believe as much.
    1 point
  10. As someone who somehow hasn't had any bad experiences with countless injected doses of imitrex, I still agree with Jon'n Bosco, whom I may now refer to collectively as JoBo. Same regarding this: I do thank my lucky stars I was able to find my way to this community/forum and embed here before FB groups were a thing.
    1 point
  11. ... this made me smile cuz i been there... once was lead on a critical sales presentation to some very important clients.... was seated between company President and VP having to prove myself to them too. a hit started right when i did, and quickly got to an 8...there was NO out, i just had to keep going for 45 mins. when the tears started leaking hit side i turned my head so they wouldn't see. might have been the bravest thing i ever did in my life..... and i have no recall of anything i said.... but i made the damn sale! they might have wondered why after the handshakes i ran out of the room tho...... .. thanks for sharing... triptans have their place... i never go anywhere w/o a Zomig ns..... but only as a last resort abort for years now. too many of us know exactly what you experienced.....
    1 point
  12. Got to love a straight shooter I completely agree with @jon019 on this one. This bit just makes me wonder about the influence being interjected on this individual. Seems that it could be a Dr. that disagrees with alternative medicine or even a family member that is unsettled by the thought of medicating with alternative (non-pharma) meds. Either way, my personal experience with triptans was awful. Sure, I got a good 20 to 30 minutes or so of reprieve from the use of the nasal sumatriptan and sometimes with maxalt as well. In the end what sealed the deal with me on triptans was a slowly ramping up cycle where I had believed my neuro that said I absolutely must take the medication at the slightest hint of an attack (I believe this to be true for migraine not so much CH). About a year ago, I did just that and experienced the looongest, worst hit filled cycle of my entire CH career! I hadn't understood the way my CH worked at the time and thought even one spike meant the end of the world as I knew it. Turns out that sometimes I get random spikes then nothing for months after. Since ditching the triptans (knock on wood) I have never experienced anything of that sort again. Do I still keep a few nasal sprays in my purse.. Yep I sure do because if I'm in a critical client meeting where I could stand to loos a project for the company I could use 30 minutes to buy me a close and am willing to suffer to keep the ball rolling at the firm. Anyhow I felt compelled to respond to this as my experience with triptans was so bad that I have road out many a hit without them for the simple fact that I knew in the end I would be better off for it.
    1 point
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