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Jost

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About Jost

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  1. @kat_92 This is another example of why it's sometimes easier to just pay cash. Similarly I use a GoodRx coupon to sideline the limitations of nine sumatriptan a month per insurance. The doctor writes it, I get the nine and if should I need it a week later the pharmacy fills it using GoodRx coupons.
  2. @jon019 You're right and at my worst moments last summer it would have saved me from the total agony of "10" attacks that came like clockwork every 12 hours. If I'd have been prepared ahead of time it would have saved my daily life and allowed me to function I'm sure. The key is being prepared and therein lies the rub. Obtaining oxygen is not easy either way and more complicated than it should be. I appreciate that is something a lot of people on this board fight for. Whether by prescription or "homemade" it shouldn't be so difficult. The fight to fill a prescription is exhausting and if
  3. @CHfather Thanks for the link! I must have searched in one forum and not all of them. In any case it's quite helpful.
  4. This is why I cringe on this forum when someone glibly tells me (or someone else) that I should be on oxygen. As if I hadn't considered it and the hurdles aren't insurmountable. I haven't found a doctor yet who over the years hasn't waved me off with the request. Much less have the chance to try to get it filled. It was kind of a bummer reading this because I have been thinking about trying again but probably not now. What's the deal with welder's oxygen? My nephew does welding and he does it in his garage. Should it be easy to setup for medical reasons? Is there any info on here in a sin
  5. How are people getting oxygen? The doctors around here are squeamish about prescribing it. Why is that?
  6. With CH an abortive needs to be faster acting then a pill unless you catch it very, very early in the game. It doesn't sound as if Ubrelvy would be any better than a triptan in that sense.
  7. What are all these new drugs and do they work with cluster headaches, migraines or both? It seems as if the triptans were the wonder drugs for years and suddenly there are all these other options. Now there's Ubrevly and like Emgality and Ajovy there are no clear answers for the average person. Are they all chemically related like the triptans? Has anyone unraveled the enigma?
  8. Do you have your answer now? Is it possible the D3 regimen help or harm it?
  9. I just moved about 40 miles away from my current doctors and am going to change. When I lived in this area before the nurse practitioner I went to was much more open minded. She's narrowed her patients down to a specific category but has another one in her office I'm going to try who I hear from sister in law is like minded. We'll see about oxygen and other topics. Perhaps I should venture onto the other boards on here.
  10. I'm a minimalist with meds and believe less is more and like to test things out without cluttering it up. My intention wasn't to be critical rather just pointing out that anecdotal may be all we have. That certainly was the case 50 years ago when trying to survive CH when they didn't have a name for it. As far as non prescribed methods I've never found a doctor who didn't cringe and shrink away from discussing it. They don't even want to acknowledge marijuana much less anything else.
  11. Relatively new here since July and have lurked a lot but posted little. I had my worst CH episode in over a decade from this past June until October to be followed by my first migraines. Still trying to sort out a lot of things including if the migraines are rebound headaches from sumatriptan. I'd like to get away from triptans all together if it's possible. I'm not a skeptic requiring a lot of hard evidence rather I want to feel better. Ahem...anecdotally: I've been doing the D3 regimen since late July and I can't prove anything but I have a pretty good sense it played a significant
  12. @Batch It would be good if the wiki were updated with this information as I just started and that is the guide that you had sent me. Therefore I am using with what is posted there. In any case it's too early to tell if it's effective for me or not I'm afraid but I'm willing to give it a try but can't afford to switch D3 now. I may not be following the regimen correctly anyway. I also add a lot of Vitamin C which I usually do during these episodes. I am not even sure what loading means. Unfortunately I went from a wicked cluster headache episode to a pretty bad migraine a few days ago. My
  13. @Jeler I am glad to read your post on Day 6 of the Vit D regimen. I ordered all of the supplements from Amazon and it will be delivered tomorrow and after over a month of this episode I'm interested in trying it. I'm starting full retirement in a few months after working half time this summer and right now I'm not looking forward to anything.
  14. On reddit there is a subreddit AskMenOver30 which is not my age group since I'm much older. I read it to see if I can answer anything. A young guy in his thirties was asking what he could do to support his wife when she "goes down" during a migraine episode. He helps with the practical things like the house and kids but he knew he had a "terrible bedside manner." I was quite stunned at the number of young men who replied and their cluster headache experiences. They were talking about it to explain what it does to their lives in order to help the original poster understand what it was like
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