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Pebblesthecorgi last won the day on July 2

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  1. I would talk to your HR department and see what process works best for them. FMLA has a limited timeframe of 6-12 weeks. In a situation where you want to work from home to make O2 sucking easier or to bang your head where the damage has already beed done I suspect HR will have a mechanism unique to your workplace.
  2. What a bunch of inhuman BS. Blood patches are straight forward, effective and can be done quickly. See rate elevation is nonspecific and just means inflammation is somewhere in the body. The fever is a bigger concern to determine the source
  3. Unintentional must of been a copy paste problem
  4. This announcement is largely through the efforts of Bob W and his organization. Long overdue strikeouts appeared after posting not sure why Admins feel free to adjust. Our community has been advocating hard since 2011 to reverse a CMS (Centers for Medicare & Medicaid Services) policy that did not allow for coverage of home use of oxygen as a treatment for Cluster Headache. Someday we’ll recap all the steps involved in this long journey. Today, we are here to report some long overdue good news. CMS has published their response to our appeal via a “Proposed Decision Memo”. They “propose to modify its NCD for Home Use of Oxygen at section 240.2 of the Medicare NCD Manual to expand patient access to oxygen and oxygen equipment in the home, and to permit contractors to cover the use of home oxygen and oxygen equipment in order to treat CH and other acute conditions.” You can read the full text of the decision memo here. Also, reference the original NCD (National Coverage Determination) 240.2.2 and 204.2. Within the decision memo, there is reference to the number and quality of comments received from the community back in 2020; Thank you to everyone who contributed. One thing to be aware of, the proposed decision states that the Medicare Administrative Contractor (MAC) “may determine reasonable and necessary coverage of home oxygen and oxygen equipment for patients with conditions unrelated to hypoxemia. Initial coverage for patients with conditions unrelated to hypoxemia is limited to the shorter of 90 days or physician prescription. Oxygen coverage may be renewed if medically necessary when a treating practitioner determines within 60-90 days after the DME has been initially placed in the home that the patient exhibits a continuing need for oxygen.” This news is very new to us, so we are still absorbing and understanding it fully ourselves. We will share additional details as we better understand. Sincerely, Katie MacDonald & The AHDA Team Copyright © 2021 AHDA, All rights reserved. This email was sent to jwutrie@gmail.com why did I get this? unsubscribe from this list update subscription preferences AHDA · M6 Stonehedge Drive · South Burlington, VT 05403 · USA
  5. Spinal headaches rival cluster attacks. They should be treated with a blood patch which works immediately. Conservative management includes lots of salt and caffeine. Blood patch is the way to go.
  6. Nasal imitrex is buffered differently than sq injection. I don't think its a good idea because it might cuse cell damage locally or not be absorbed. This is a theoretical answer but dividing cartridge doses into 2 mg aliquots is a good alternative if vials not available. It odd that vials arent available because Canadian pharmacies sell them to the US. Imitrex overuse can cause chest tightness or stomach pain because of vasoconstriction. Generally speaking younger folks (sub 55 or so) can tolerate more doses. Using oral version isn't much help for acute pain of a cluster. Rebound headaches seem to be dose and frequency related. Oxygen properly used is your best friend for acute attacks
  7. The ER setting is not a place you will get visible compassionate care. All day they see pain scenarios: kidney stones, gallbladder attacks, headaches, back pain and trauma. Its hard to work in that environment and not seem a bit jaded when someone comes in with a pain complaint.. Not an excuse, just an explanation. Nothing moves fast in an ER except chest pain, strokes and trauma. As you were given steroids and popofol I'd say you got better treatment than most ER. Still it sucks. Emegality usually doesn't work for acute clusters, more of a prevent. Imitrex usually works but has some downsides. Busting can be of value but not for everyone. I hope your family doesn['t need the ER again, it sucks
  8. For me the debilitating attacks stop suddenly and without explanation. I have pressure and shadows for a few weeks after. Of course I am always fearful the cycle will start up prematurely
  9. It always amazes me how new drugs get through the "rigors" of approval emerging as side effect free only to find out once in "the wild" to be problematic. Confirms that money talks. On the other hand if we never had a new med to use everyone would complain the process is too cumbersome. In the end Ricardo is correct, doctors and other providers need to LISTEN when patients offer serious complaints or concerns. All medications have potential side effects especially if you are on other meds that alter your metabolism. Thanks for the info!
  10. I am not sure I understand how cluster is blocking your ability to get hormone help. I hope you find the solutions you seek.
  11. I agree with @jon019. In the past when I was young, stress was a full time part of my life and the headaches seemed to be occasional and manageable. Once I worked my way into a quieter less stressful situation the headaches seemed to escalate. Psychological stress seems to make the demon less effective while physiologic stress raises all sorts of hell. (My experience) You will never ever be able to relate the pain and related issues to anyone in a understandable way. There is just no way to do it. Watching a video like the National Geographic piece featuring Dan shows the horror of an attack but most people don’t believe it. Dan is a wonderful human but no one is that good of an actor., It’s on YouTube search National Geographic and psilocybin. Because no one can really understand the unfair hand you have been dealt going to a meeting like Clusterbusters holds is an amazing experience. You are in a room of folks with whom you don’t have to explain a damn thing. Everyone understands so you can discuss coping, treatments and support without having to do any foundational talking. The meeting is in Chicago this year. Come if you can its much more effective than any therapy session.
  12. I think this would be very individual and dose dependent. Generally speaking the experience follows a fairly predictable course of six hours. The dose ingested will influence the intensity of the experience but usually not the length. Once you get into really high (heroic) doses of 5 gm (dried) the length of the experience is the same but you may have ineffable memories. Sticking to the sub 1.5 - 3 gm dried dosing I suspect sleep might be a challenge because there can be periods of anxiety and intense closed eyed visuals. My experience at late night dosing has been to count on being up all night. Lower doses, sub perceptual doses or micro dosing may be a different story but such doses have less info regarding effectiveness. A well prepared experience as regards set & setting can be rather rewarding so making time may be worth the effort. I do understand having a busy life how hard to is to carve out “me” time but fighting the beast deserves some selfishness. Best to you
  13. If you are having cluster exacerbations that are affected by hormone changes you could try "turning off the ovaries" with something like Lupron or continuous oral contraception. There is no contraindication to hormone therapy (birth control, hormone replacement or cycle suppression) as directly regards cluster headaches. Some women have headache intensity changes depending on cyclic changes. It would be a rare neurologist who has a clue about cycle control, you would likely need a thoughtful gynecologist to help. Someone who specialized in reproductive endocrinology (infertility) would have the best knowledge base to help.
  14. MAPS is holding their convention next year in Denver. A State with legalized cannabis and a city with decriminalized psychedelic plants. Hard to imagine momentum slowing down.
  15. https://news.wisc.edu/uw-madison-pioneers-masters-program-in-therapeutic-use-of-psychoactive-drugs/ It’s interesting they are establishing a degree path for a subject that still has a way to go in terms of legal availability. It might be fun to do but its 31 credits at 1500.00 a credit. That’s a lot to cash for a basically useless degree.
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