Pebblesthecorgi

The definition of episodic or chronic is just that, a definition. Though it matters to the individual because of the pain, anguish and disability are real and life altering, a definition is used to characterize the condition for medical bookkeeping. Personally I suspicion that this is a spectrum condition. What I mean by that is all the TAC's are different presentations of a similar mechanism. Whatever is causing the inflammation, vasodilation and sympathetic symptoms (drooping eye, watering pupil changes) probably has a similar genesis with a subtly different manifestation. What speaks against this is the variations in treatment response. This includes different responses to O2, triptans, psychedelics, analgesic and surgery. One would think that if there was a common pathway we would see similar responses to treatment across diagnosis'. Instead reports seem to indicate though there is some cross over in treatment response (triptans seem to work for chronic, episodic, and other TAC's they do not offer much relief in trigeminal neuralgia) and there is little cross over with other interventions. (O2 and psychedelics as a treatment option seem relatively confined to treating classic cluster headaches. So we may speculate for a cogent answer, the reality is we know so little about this scourge and this leads to lots of speculation and exploitation. The pain these conditions inflict is so intense you are willing to subject yourself to just about anything damn the risk. Having said that, I always wonder why many resist trying alternative therapies like the classic psychedelics. Here is an intervention that seems effective in folks with cluster headaches and supported by an abundance of evidence regarding the safe use of these modalities. Collectively we have been misinformed by our regulators/government/medical providers that these substances are dangerous and have no medical applications. If the evidence of safety and efficacy regarding psychedelics were not so robust we would not be living in a time of psychedelic Renaissance @elrik138 your situation is especially challenging. When you have multicentric head pain syndromes the treatment arc gets scattered and it has the potential to have interference from multiple interventions. Surgery, nerve blocks, injections and infusions may not have an additive effect and may work contrary to each other. There is no way a health care provider would understand all the potential issues because this is an uncommon condition and few have the time or interest to methodically sort it out. Heck we dont even understand what is causing these or how the interventions work. If you have classic clusters and respond to O2 as an abortive familiarize yourself with psychedelic options and the safe use of the busting option. It may sound trite or insincere but these molecules can change your life but proper use requires self education, proper preparation, personal responsibility and an understanding of set and setting. We have yet to produce an effective treatment tree for cluster headaches alone and when you add in a couple of other diagnosis there is no way to coordinate treatment unless you do it yourself. Dont count of your doctor cause there is no way they have time or interest. You must be your own advocate.

More discussion in the popular press about one of the more effective treatments for cluster headaches. Although treating cluster headaches is not the focus of the topic every bit of popular press on the potential benefits of properly used psychedelics helps to destigmatize their use and may make others open to exploring legitimate (though illegal) use. https://www.cbsnews.com/news/psilocybin-active-agent-in-magic-mushrooms-could-treat-addiction-depression-and-anxiety-60-minutes-2019-10-10/

There is not enough O2 either by concentration or volume to be very helpful. I tried it a couple of times to see if it would work for me. I respond to O2 in traditional delivery for clusters very well. The O2 in boost was not noticeable and did not respond better than hyperventilation alone and was inferior (my individual impression) to a 5 hour energy. Its marketed overtly for altitude issues and covertly for hangover treatment. It might be good for one of the two. I suspect any effect would be short lived and largely placebo.

The role of ketamine is still pretty ill defined. I do not believe there is an established role or treatment protocol for ketamine. Most of the treatment options are case reports and individual reports. Because ketamine is “legal” and available it should be easier to study but because it can be a profit center infusion clinics are popping up with their own protocols mostly to treat depression and anxiety. Cluster headaches are largely a side business. Until there is a study (s) to demonstrate effectiveness the intervention is hit or miss ( experimental)

https://www.sciencealert.com/scientists-made-a-bacterium-that-poops-out-psilocybin

Clusters do not cause any known physical damage. Of course each clusterhead has their own personal hell of psychic damage which could range from mild depression to defiance to PTSD-like manifestations. Mental health challenges can cause legitimate physical problems. The other issue becomes imaginary thinking. We spend lots of time trying to figure these things out (triggers, weather, meds, habits, etc. its easy to try and explain every anomaly we experience in the context of clusters but its often unrelated.

It’s ok to be on for surgery. You do need to let the anesthesiologist know to avoid adverse interactions, most common being heart rhythm disturbances. They can manage you well. Let them know about the clusters, they may give you some ketamine. Request to wake up with high flow O running. Best to you.

What you need to do is talk to your doctor and see if she\he will code you as chronic migraines. The CGRP class drugs seem to have better coverage for that diagnosis. The other option is to talk to HR and see what appeals process s available. Often BCBS is an administrator for employers and the pharmacy benefits are actually dictated by the employers group. With persistence you should be able to find out the circumstances the med will be covered (Amovig is an option) and then have you doc massage the diagnosis to get you approved. Nonsensical, yes - Manipulative, yes - sucky, yes but in the end you have to play the game even if you dont know the rules.

energy drinks can be helpful. Those energy shots can help some and are easier to "chug" Actually anything that promotes vasoconstriction can help (like caffeine). Taurine also has some benefit. He can lessen the side effects of the sumatriptalin by getting vials or dividing doses (search for method). Usually 0.2 mg is enough and you don't get side effects as readily. Remember suma is a two edged sword and rebound headaches are not uncommon. O2 first as an abortive, suma as a last resort. Prevention with D3 is worth exploring. Read the New Users-Read here first at the header. Best of luck

Sounds like made up information to me. Most of studies with O2 have men but that's because of diagnosis bias. Physiologically male and female brains function the same. Its the manifestations of that physiology that creates the "Mars/Venus" effect (tongue in cheek, wink). Even if "60%" was true its still worth trying properly. Ask you doctor "If I have cancer and had a 60 % chance of responding to therapy would you offer it?" O2 is inexpensive and effective for aborting clusters and every cluster head deserves a chance to try it.

I believe (opinion only) if a clusterhead needs surgery there are a few things you can request that can minimize attacks. In fact it possible that some anesthetic agents may help treat clusters. The literature on this is spotty and clinical reports are few but based on fairly decent response to psychedelics and the imputed mechanism of action certain anesthetics possess its not a big leap to speculate on what is the "best" mode of anesthesia if you require it. Again this is mostly based on speculation and personal experience. Be careful how you approach an anesthetist because if you act bossy you'll likely not get any consideration. There are two main forms of anesthesia utilized in developed countries: IV medications and inhaled agents. Its not unusual to mix the two. For cluster folks with wanky hypothalamus' the use of IV ketamine and propofol hits the right receptors and provides good anesthesia. In anesthesia parlance's this is a TIVA (total IV anesthesia) and is a pretty versatile combination. Adding some steroid like decadron also helps along with asking to wake up with 100% O2 running at 10-15 lpm through a non rebreathing mask. I have had the misfortune of needing a general anesthetic 5 times in the last year and a half and each time I was relieved to wake up clearheaded and lucid. I was surprised how all the anesthetists were aware of O2's role in clusters and more than willing to accommodate. They warned me about "green goblins" appearing and nightmares (ketamine is know for such things) I assured them I was able to handle that better than a cluster. Win another for the psychedelic experience.

Even if O2 only works for 50% of cluster sufferers it is irrational not to try it. Its safe, cheap and effective. The cost burden is less than any other intervention. I will never understand the thinking of someone in medicine when they deny trying a treatment because it does not work for everyone. There are very few one size fits all conditions in medicine and many medical interventions and treatments have less than 50% efficacy. We do not hesitate to "try anything" for a cancer patient even if there is a less than 10% chance of efficacy. Lives are interrupted, rendered nonproductive or ended because of inadequate treatment of cluster headaches. There is a special place in hell for those who deny the opportunity to try O2 or deny reimbursement for O2.

I have similar experiences with lurking beast. In the beginning I was able to manage with some benadryl 25-50 mg at night. When my cycles escalated I found Clusterbusters. You are a young person and need to develop a workable strategy in case your condition intensifies. I do not tell this to scare you but rather counsel preparedness so if it happens (and I hope it does not) you are not scrambling for relief. An up front rational plan is best to avoid making deals with the devil. Since Verapamil, oxygen and blocks seem to work it sounds like you have classic cluster headaches. This should assure you have access to many treatments described. Besides what you already do consider the D3 regimen described in this forum. Many seem to benefit from it and the downside is pretty much nothing. Understanding busting is worth exploring. It is not for everyone and preparing yourself in terms of spiritual health, mental health and implementation makes the option a more positive experience. It is much better to source or self supply when the cycle is over than in the midst of pain. Plus self provision has a 2-3 month horizon from scratch. Stay informed, horde your meds in case lifes situations change and explore options. Hope you say pain free. More than you asked for I realize but its best to use the collective wisdom of the generations that came before you to defeat the demon

Never heard of him but surgery as we know it is not a treatment for cluster headaches. There has been significant discussion about this here and elsewhere. If someone claims “ to cut is to cure” as regards headaches skeptics should rule the day.

https://hub.jhu.edu/2019/09/04/hopkins-launches-psychedelic-center/ The cluster community has a special role in this type of situation. Most conditions psychedelics are believed to be helpful in treating fall under mental health which is complex and multifaceted. Cluster headaches are more of a medical "condition" and while individual impact and perception differ; somehow a medical diagnosis is more acceptable than a mental health diagnosis. Now anyone suffering from mental health issues knows that is a pile of crap at the end of the day any road that gets these substances rescheduled is a road many will benefit from. So if you get a chance to participate in a cluster headache study using psilocybin or other psychedelic take advantage of the opportunity. The pain you save may be your own and many others....

Prednisone is ok with verapamil and D3. Prednisone is a potent antiinflammatory. Depending on the dose regimen you are on it most likely not stop a cycle but it likely will give short term relief while preventive meds start to work. The D3 regimen is intended to reduce inflammation and will be better tolerated and safer than long term steroid use.

I'll be 6 weeks tomorrow. Walker for a day or so then a cane til I lost it (about 2 weeks) I can do stairs pretty well. Been driving since week 2 (left hip automatic car). Still can't ride a motorcycle. Went back o work week 4 post op. Headaches have not been an issue. I'm in about an 8 month remission. I tend to use low dose MM tincture when I get shadows and that works for me. Like all of us the beast acts in erratic, irrational debilitating ways so I am never sure if an intervention helps (MM, D3, steroids, amovig, etc) or if the cycle has run its course. I am reasonably confident #1 O2 properly used is an effective abortive for classic cluster headaches and #2 mushrooms saved my life.

Congrats on the hip. Just got mine 2 weeks before you. I believe the anesthetic agents used can help prevent clusters if used properly. Last year I had 4 procedures for a kidney stone and this year the hip. I asked them to use ketamine, propofol and steroids while waking up with high flow O2. Each time I awoke with the clearest head ever. THe Vit D likely had little to do with clotting or not clotting but at supra physiologic doses no one can say for sure. The evidence is largely antedocol. Almost always a surgeon will want you on as few supplements and meds as possible because its impossible to know all the potential interactions. Starting the D now probable wont create an adverse event. Late bleeds are infrequent and if you needed anticoagulation for other reasons you would have restarted by now. Freud is right on about stretching. This is paramount to long term success and becomes critical in the first few months post op. Particular attention should be directed to stretching the illiopsoas muscle and strengthening the glutes. THe general consensus is it can take up to a year to get full function back if you do the rehab work. Stay strong

In the recent past I successfully trained for an Ironman. Understand completely the post training hit, it robs you of the joy of completing an event. I am strongest in bike and running isnt my thing but the outcomes are likely similar. I found taking salt and magnesium at intervals helped prevent post training hits. Generally most of my hits came at night so sleep disturbances had the greatest impact on training. Busting helped too ( I think). I firmly believe it is best to pursue everything you can and fuck the beast. If you alter your life for the beast the beast wins. Never let a bully win.

Stress really keeps the beast at bay. Most of my professional development was extremely stressful. The beast stayed away until once I started to settle down and could enjoy the fruits of my labors.. The beast became vindictive and vengeful making up for lost time. Thats when I sought out help and discovered busting...life changing

Sadly your experience is typical of folks with non fatal, longitudinal poorly understood conditions. Most office based physicians are unable to deal with problems that do not fit inside a prescribed box. The best you can hope for is a cooperative physician partner who can support the limited options modern medicine has for dealing with cluster headaches. This would include prescribing O2, the occasional imitrex/steroids/misc Rx, lab tests for Vit D levels and maybe CRGP inhibitors. As most of us know there's little to be gained from an ER visit or a doctors visit when it comes to cluster headaches. Not fair, it sucks and I doubt it will ever improve. This is why groups like this are important.

Could this qualify for a Nobel prize?

O2 concentrators generally are sub optimal. You need the 100% O and flow rates of at least 6-8 liters per minute. Many folks need 10-25 liters per minute. The idea of 100% high flow oxygen is to initiate central vasoconstriction to abort the headache. It seems like a pain but getting O2 bottles can be life changing. There are well put together info posts on using welding O2 if the medical system betrays you.

An interesting read. An unfortunate tale of being truthful. https://www.huffpost.com/entry/cluster-headaches-psychedelic-mushrooms_n_5cf7d9e6e4b067df5ca1bde9?guccounter=1&guce_referrer=aHR0cHM6Ly9uZXdzLmdvb2dsZS5jb20v&guce_referrer_sig=AQAAALeuDkw92Fqkn2a8PStvWDb0pK-wQiafbDXTVnwK3bwbzXKBMEwIMFfrRY15us5RfILtvBf3EVG0pIdA5j5MbFfwm2pTSCphJi3MSYzzdiCtDO_gWZzQo_GULUFtKHiekhKsGxK1KpICv46OvLXRvfiKMMm-G_PZ6WQCyCnNIpXD

I am not aware medicare will cover O2 for cluster headaches. This has been a bone of contention for some time. The CMS ruling ignorantly stated there was too great a risk of respiratory depression giving oxygen if someone retained CO2. The other concern was for eye damage which is only applicable to preterm infants. Such concerns are ridiculous but exist. If you have strait medicaid or medicare there is little change of getting O2 for clusters unless someone is manipulating the diagnostic codes or you have a supplemental policy that is savvy enough to recognize O2 is cheaper than even rationed imitrex. It is a horrible situation that governmental agencies should be ashamed.