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Everything posted by Pebblesthecorgi

  1. Just to clarify. My hip replacement was because my dog was smarter than me. She knew better than to try and navigate an icy deck. Avascular necrosis of the hip does occur but its fairly rare and surprisingly less dose related than I appreciated.
  2. I think it depends when you start getting disabled by the beast. It also depends on concomitant conditions. You defiantly have to be strategic to deal with this condition. Disability is an option for the chronic or frequently episodic but to navigate that quagmire likely requires an advocate. If you had the wear with all to make it to the level of a PA (not easy) I would work as hard as possible to recover that license. There are jobs working as a reviewer for insurance companies or in telemedicine which allow one to work at their own pace. Good luck. Life with clusters sucks but you have to play the hand you are dealt.
  3. Generally speaking moving forward with surgery is a balance between how the condition is affecting your quality of life and the potential for long term harm if intervention is delayed. Many times radiographic appearance and symptoms do not correlate. Imaging is a guide to intervention but not necessarily a mandate for surgery. If you can manage the pain, have effective relief from things like physical therapy, medication and range of motion its better to avoid surgery. If on the other hand you are just "grinning and bearing it" then having surgery is your best option. You can always do surgery but you can never take it back. No procedure is without complications which is why it should be the last thoughtful option..
  4. So sorry to hear you are struggling. Sounds like you are going to need a fusion which are highly successful procedures in most cases. Will likely lose some range of motion but the pain will be gone so it seems like a far trade. Spinal surgery is not for sissies and since you are anything but a sissy you will do well. Make sure you have someone who has been at it a long time, has a good volume of experience with the procedure and is nice to your wife. Stay strong.
  5. 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.
  6. 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
  7. Unintentional must of been a copy paste problem
  8. 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
  9. 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.
  10. 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
  11. 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
  12. 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
  13. 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!
  14. I am not sure I understand how cluster is blocking your ability to get hormone help. I hope you find the solutions you seek.
  15. 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.
  16. 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
  17. 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.
  18. 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.
  19. 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.
  20. I don’t think the vaccine itself will worsen a cycle. I do believe other states of inflammation will mitigate how bad a cycle can be. The injections do incite an immune response which is variable between individuals. The second shot seems to bring on more symptoms in people who have reactions. It’s even worse in folks who had the virus and chose to get the vaccine. I do think its worth considering the vaccine because COVID itself releases such an aggressive immune/inflammatory response it’s bound to exacerbate a cycle or make a chronic more miserable.
  21. interesting report from a pretty strong group. Personally I believe you have to do"the work" either counselling of self reflection to gain success. The psychedelics are just a tool. The article exceeds size limits so Ill try and link it https://elifesciences.org/articles/62878
  22. You have a lot of parallel processes going on at the same time. You will often get some bad slapbacks with mm. That seems a common theme when used during cycle. Your description would suggest the D3 is actually tempering them. Baseline life stress may actually lessen attacks if your adrenaline levels are elevated. It’s different for everyone. the advice to be on a disciplined dose regimen is good.
  23. Struggling with your humanity and existence with the burden of cluster headaches challenges even the most stable of souls. Add the element of a panic attack, which can feel like the arrival of death itself, and life's burden can be overwhelming. Every human is defined by their underlying physiology, spirituality, history and aspirations, Its what makes us unique and why treatment is rarely a one size fits all problem. Certainly on a basic level cause and effect can be directly related but because we inherit slightly different metabolisms, slightly different anatomy, vastly different toxin/nutritional exposure and upbringings the manifestations of disease and response to treatment can be predictable or paradoxical. I believe that is why some folks can use alcohol and drugs without much long term consequence and others ruin lives from the onset. I also suspicion its partially why we hear about some things working for some clusterheads and the same treatment gets no traction with others. If possible get a support network into place so you can vent and express yourself. I believe you must work hard not to be dramatic and emotional. Express your experience in as calm a manner as possible. People turn off fast if they sense a drama king/queen. Not fair but true. It helps if you write it down and codify it before verbalizing to others. This is true if you are talking to a support person or a medical professional. It helps you align the facts and reduce the embellishments and makes the communication as succinct as possible. Writing it down also helps putting things into perspective and understanding your personal journey and what a strong warrior you really are. Thats thought and opinion take it for what its worth. Panic attacks are very challenging and can be disabling. THC ingestion can often fuel because some folks get paranoid, feel guilty or are not comfortable being relaxed. Most of us who know potheads marvel at how they use it to alter perception, mellow out and frequently use. This behavior is unique to a subset of individuals as there are many more who get no joy from pot. It is possible to have a panic attack proximate to THC use but very unlikely its physiologic 24-48 hours later unless the person is a chronic. THC is stored in the fat and the brain is a big gob of fat. Triptans like Imitrex and Zomig can induce anxiety mostly through reaction to decreased stomach activity and non cardiac chest wall tightness. The uncomfortable feeling can precipitate anxiety. Diclofenac is a non steroidal like ibuprofen and usually doesn't cause or mitigate anxiety. Paroxetine is a serotonin reuptake inhibitor (SSRI) and the model drug this antidepressant class was popularized. Since we suspicion clusterheads have a serotonin regulation problem you can get all sorts of atypical responses. It is worthy to note in a depression paradigm many believe it is a spectrum and to become depressed one must pass through anxiety first. Conversely to defeat depression you must pass back through anxiety. Since anxiety is such a horrible debilitating state most folks get stuck in depression. If the Paroxetine is helping you get out of a depression you may be approaching the anxiety as a path to wellness. Thats where support and counsel helps to get you across the threshold. Meds alone rarely are an effective intervention expect for be pharma. Don't know much about Quetiapine but from what I read it looks like a supplement to help with brain function and healing. Some promising results but the jury is still out. Unlikely to be harmful. Verapamil is a calcium channel blocker used historically for hypertension. You were on a very low dose. Its possible it could drop your pressure a bit and cause anxiety or in very rare cases cause your heart to beat abnormally which can also provoke anxiety. It has other anxiety provoking side effects but its rare. Its not use too much anymore because it wasn't a very good antihypertensive and heart rhythm disturbances had to monitored. Steroids and steroid weans can cause anxiety. Lorazapam is a benzo as you mentioned. The prototypical benzo is valium. Long term benzo use can lead to physical and psychological dependence but usually you are talking about moths to years of use. Lorazapam is a very short acting medication and 0.5 mg is a very low dose. While its possible lorazapam contributed to the anxiety its more likely you were under treated and got in that horrible zone between panic attack and relaxed. Judicious use of benzos can be very helpful in managing anxiety but are best used in conjunction with coordinated counselling. They also can also help while busting during that anxious period. Vitamin supplementation is being vigorously studied and reported. While the data is promising and impressive definitive studies are ongoing. Hopefully these studies will further our understanding of cluster headaches and their management. Until then I would suggest the risk benefit calculus favors trying vitamin supplementation following the guidelines put forward. As with most cluster heads you search for explanation and cause/effect in a desperate attempt to manage. Imaginary thinking predominates especially during a cycle. We look for triggers, blockers and treatments to end the horror of an attack. Our uncommon disorder doesn't get much attention from medical science so we are left to ourselves and citizen science to explore options and support each other. At the end of the day it helps to know panic attacks are real, debilitating and manageable. Acknowledging them and exploring management options are important to quality of life.
  24. Not so easy to do. Not sure anyone's video would replace the National Geo Dan segment. Any clusterhead can relate to that. There was the documentary guy several years ago looking to film an attack but I'm not sure they ever got legs. Selfie stick in one hand O2 mask the other
  25. good to point out, thank you. That explains why my corporate filter kept blocking the links. My comments were directed at mindmed which is a legit operation looking to commercialize and research the benefits of psychedelics. My thoughts about buying psilocybin containing products stand. Appreciate you noticing the "n", old eyes Its interesting that mindmend.com is a domain for sale while mindmend.co goes through to the offer. Emphasizes the need for care before clicking or concluding.
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