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Everything posted by Pebblesthecorgi

  1. Its interesting that the military is a primary funder of psychedelic therapy. There are several trials underway looking at treating PTSD, moral injury and brain trauma with various psychedelics. Mechanism of action and effective protocols are still undefined but the overall success rates are not disputable. Veteran self help groups and/or healing circles are also widespread. Less is specifically known about outcomes because these groups hold thing closely and in confidence. They tend to practice a combination of talk, classic psychedelics and other psychoactive substances like toad DMT, ayahuasca. ibogaine and MDMA. Hopefully successful protocols and positive results will become the norm. One thing for sure is psychedelics have the potential to make the world a better place.
  2. As I have observed the long term effects of psychedelic therapy over the past few years along with the significant amount of research and antidotal reports it would not surprise me psilocybin may help. I would speculate the help comes on two fronts. 1) The classic psychedelics' seem to have neuro regenerative capabilities which hold promise for all sorts of issues like physical trauma and psychic trauma. There is much to be done in proving this but the data is converging from many different directions which suggests to me it is valid. 2) The classic psychedelics ability to reset the "default neural network" have a profound effect on helping with coping and the emotional baggage physical suffering brings. Long term conditions like clusters and fibro can at least benefit from this aspect of psychedelic properly utilized. This is of course, my opinion.
  3. In short, High dose prednisone 60-100 mg a day for 2-4 weeks can help especially in an episodic situation while other modalities kick in. It can also help with getting some sleep if one gets strung out on nocturnal attacks. Many docs prescribe a dose pack which is a burst dose with quick taper commonly used for back pain. This may have short term help but its not enough for cluster headache in most cases. Of course there are costs with the benefits. Prolonged steroid use can suppress the adrenal glands and it might be a struggle to get them back in sync. The more feared side effect is aseptic necrosis of the hip. This is a situation where the blood supply to the hip joint is occluded with small fat emboli and the bone dies and the joint needs replacement. Unfortunately this situation is not dose dependent and unpredictable when it might occur. On the flip side many many folks need steroids for a variety of conditions and tolerate them just fine. Long term steroid use can cause other issues so its not practical in our situation. The most common side effect is agitation and short temper especially during withdrawal.
  4. There is a standard reference in a resource called Up-to-Date. It is an on line resource most hospitals subscribe to for their caregivers. Individuals can also get a subscription. I believe a non medical person version is also available. the offered info is current, collaborative and generally adheres to standard of care. for cluster headaches oxygen is a first line abortive. I believe a copy was uploaded some time ago. I’m not sure if it still lurks.
  5. There is a lot of curious, conflicting, confusing and contradictory evidence out there. It’s always been the case but much more amplified and widespread as regards covid because no one is unaffected. There are so many examples of this from hydroxychloroquine to ivermectin to vitamin D to vitamin C to famotidine and on and on. There is also tons of controversy about anti virals and monoclonal antibodies. Won’t even address vaccine issues. Things are moving so fast and so much data is pouring in it becomes very difficult to vette information fairly and apply it appropriately. And then there is the rapidly changing landscape because of mutations. It is very hard to maintain a consistent treatment protocol and apply it appropriately. Then there are the resources which are taxed beyond comprehension especially in human terms. So by the time the sound bite is distilled the information reported seems confused and conflicted. And it is. I can’t thing of a time in history when so many people had access to so much information so fast in the context of an evolving situation. Then there is the interpretation of the data. For instance, if I am correct, the study sites regarding Benadryl was a report of in vitro (test tube) attachment of the virus via its spike protein to human cells. What is seen in the lab seldom translates to the real world. So while the observation may be correct what it means is a longitudinal population application is completely unknown. Of course there is professional fraud as well..an example of the seminal report of ivermectin to treat covid which was debunked and withdrawn. Normally this process occurs within a small group of researchers with an interest in a topic. Everyone is interested in covid so it’s amplifies the big mess of info we are fed. On an individual level each person must do a risk benefit analysis and make a decision for themselves. It’s probably prudent to listen to what the mainstream, practicing providers suggest but if you choose to augment with other interventions and are not causing yourself harm why not? Things like masks and vaccines are a bit more controversial because the point of their use is to prevent others from being infected. It’s far from 100% as a strategy but its the best offer we have. Members of a society should work together to protect each other and support a common interest. Society has devolved a bit in the face of current events but I will remain optimistic our center will return.
  6. Hard to imagine there’s not a genetic component. It’s hard to clearly establish because so many are misdiagnosed or suffer delayed diagnosis. And family history gets lost. 50 years ago crazy grandma was written off as a crock or malingering. Who knows who had what? Even those of us who have a deep pedigree there’s not enough info to know. Also paternity could be inaccurate or there is an unknown adoption sort of situation. I believe the genomic studies will cast a better light on whether genetics are a substantial contribution. there is a study ongoing investigating this very question. Several of us gave blood a few pre covid years ago.
  7. Cluster headaches are like belly buttons, they have been around forever Gordon2005_Article_HistoryOfClusterHeadache.pdf
  8. My personal belief is cluster folks use tobaccos as a vasoconstrictor which is why the prevalence is so high. Sort of like "clusterheads use more energy drinks than the average person" Anything to narrow those vessels and mitigate the pain
  9. Baclofen is not a NSAID it is a GABA antagonist. Most commonly it is used as a muscle relaxant. It has a tendency to make people feel dopey and dysphoric. A one off report of curing something as complex as alcoholism is problematic . Most of the research in this area is inconsistent. The use and withdrawal of baclofen can have serious consequences. For our purposes there has been limited reports of baclofen use in treating cluster headaches. An optomistic report of a case series in 2001 shoed promise but no follow up seems available. Dealing with uncommon conditions like ours is problematic. In the end it would be hard to argue against proper nutrition, balanced vitamin levels and a healthy lifestyle. Easy to say, hard to execute.
  10. That is the study I mentioned. Its the only study underway. Searching clinicaltrials.gov brought it up. Its started in 2019 and is expected to close in 2023 you can search by condition and when you combine cluster headache and lsd its what comes up, it is the only study to match that combo https://clinicaltrials.gov/ct2/show/NCT03781128?cond=cluster+headache+and+lsd&draw=2&rank=1
  11. ok I found the article, I'm not really soo sure how good it is but thats for journal club I guess. https://ascpt.onlinelibrary.wiley.com/doi/10.1002/cpt.2487
  12. I am a bit skeptical about the info this company touts. It is incredibly hard and time consuming to do this research (how long has the Yale study been recruiting) and yet looking at what they report, there are no references to scientific journals to support their claims. A search or govermenttrial.gov yields only one LSD and CH study underway since 2019 and still recruiting 30 patients. The D3 study Batch is part of a cluster headache search and still recruiting. It is unlikely to claim expertise and therapeutic results (LSD/Mescaline/psilocybin/etc) in all of these areas. MDMA has been studied by a large group worldwide (led by MAPS) and they are still at least a year away from final results. The time frame is so accelerated and the lack of references is concerning. A slick website, lots of unsubstantiated claims and improbable timelines would suggest great caution. This seems like a financially motivated group trying to piss on every bush in the psychedelic world to claim patent rights
  13. I like your idea of contacting the compounding pharmacy to locate a physician who will work with you. Can’t your doc get you a bridging prescription? Ketamine is schedule 3 so it’s like getting an opiate. Miserable place to be in. I’m not sure I’d be so stoic with the O2. Use it for all of them cause it works better and faster before the headache is fully establIshed. Keep up the positive attitude it’s tough to stay strong when you are constantly in the shit.
  14. 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.
  15. 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.
  16. 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..
  17. 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.
  18. 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.
  19. 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
  20. Unintentional must of been a copy paste problem
  21. 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
  22. 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.
  23. 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
  24. 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
  25. 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
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