Pebblesthecorgi

Lithium is one of those two edge sword drugs. It can make you feel pretty crappy even if it works. You need to be on it a while to work and constant lab monitoring is mandatory. This is not a med you screw around with. The overall data a lithium is pretty plus minus and seems often to be a drug of last resort. My thought would be to try the block as long as the physician has reasonable experience (50plus) with the technique. My rationale is that the block is a 1-3 time try and does not have long term side effects. I realize you have been through the mill with this and you should be open to all things. Prioritize the interventions in a way that make sense. Mixing lithium with psychoactive compounds may produce unwanted experiences so great caution is advised. Positive thoughts

OTC Nasal sprays can cause significant local blood vessel constriction. The central effects are less known. The serotonin receptor engagement is mostly described in the lab and the extent in the human is less clear. If it works thats great but use caution because it is very easy for your nose to get habituated to the spray and you have to use it all the time to breath easily

Indomethacin is a powerful non steroidal, sort of a super ibuprofen, which is generally taken in a short course. It is also used by knowledgeable headache experts to distinguish between cluster headaches and another trigeminal autonomic cephalgia (TAC) called hemicranium continuum. Cephalgia is a fancy name for headache. Para tabs are tylenol (acetaminophen). Dymista is a combination of steroid and antihistamine for nasal inhalation. Sirdalud is an alpha-2 receptor blocker that can be used to treat muscle spasms. I do not think any of these medications alone would interfere with a bust. When you throw a whole bunch of supplements and medications into the mix unpredictable things can happen. Thoughtful use and proper preparation will handle most adverse side effects. As a rule its best to reduce expose by limiting non essential medications.. Once her pulmonary health is stable I believe she can consider busting with a certain degree of confidence. Again, the concern with any non traditional intervention is the unfamiliarity with the experience and potential overreaction to symptoms while in the midst of a psychedelic experience. The best way to combat or avoid this is by proper preparation by the individual and their sitter. It can not be emphasized enough the importance of proper set and setting with these molecules. Of course one does not need a full blown psychedelic experience to benefit cluster headaches in many cases. It is best to be prepared in case the individual gets more than they bargained for with a treatment. Since things like MM are very variable in content of active ingredient a person might find themselves further out there than intended. You are a good soul and friend to translate and help others, it is not an easy task.

You are presenting a fairly significant list of prescription drugs largely aimed a an individual with significant reactive airway (or COPD) lung disease. The asthma meds are a mix of bronchodilators (open up airways), inhaled steroids and a combination of the two. The medrol is a steroid (fairly equal to prednisone in potency) I would assume being indicated for the lung condition. Zolt is a proton pump inhibitor similar to protonix which blocks the production of gastric juices irreversibly. It works through an enzyme system and generally is used in short courses, it does not work right away but you dont want to use it in a sustained manner either. A beta blocker is usually used for hypertension although it has a role in migraine prevention and heart disease. The estrogen preparations are used vaginally and have little systemic absorption once used for 6-12 weeks. So if you subscribe to the belief steroids are blockers there is a concern about the medrol and some of the inhaled meds. The bronchodilators can cause feelings of anxiety and a rapid heart rate but should not block. I doubt the proton pump inhibitor is an issue. Systemic estrogen can increase drug metabolism in the liver but usually vaginal estrogen doses are insufficient to cause that. Beta blockers show up on some blocking lists but I doubt its a real issue. This is the med list of a person who has significant medical issues. Would not advise stopping any of the pulmonary drugs without close medical supervision. If she has been on steroids a long time I suspicion they are required for handling physiologic stress and weaning is probably not practical. She needs to be well prepared for the anxiety that can accompany a busting experience and a sitter needs to understand her breathing issues. Ultimately it is her decision but tread lightly Significant care and caution are urged.

I have had gout and kidney stones and yes they hurt like all get out. Clusters are in a class of their own. More frequent, unrelenting, narcotics, alcohol and NSAID don't help and there is no understanding of WTF is going on. Unfortunately clusters train you to not look like you are hurting so when something treatable attacks you dont look like you are in pain and delivering care slows

Personally I am not really into trying to compare pain or trying to "one up" others in the suffering department but this may help some vindicate themselves or at least give perspective when dealing with insensitive partners, colleagues and other riff raff. https://www.mylondon.news/news/health/nhs-pain-most-painful-conditions-15701223?fbclid=IwAR2zqmTNLdESNWJcLH5nM3yZAz6tqEsXQ0ezoQ6Tm2e03khiXiYeTpe-Lkk

I hope you achieve some relief. Personally I do not believe a dose pack of prednisolone is genuinely effective in treating active clusters.. Burst doses are helpful for acute inflammation that is readily reversed but the inflammation starting a cluster cascade is more chronic (or at least it seems so). If you choose the steroid route generally one is looking at 60-100 mg/day of a prednisone equivalent for a couple of weeks. Tapering doses in this circumstance are used to avoid agitation from withdrawal. I would regard steroids as a two edged sword. At times they can be life saving but dependence on them can lead to misery. It sounds like you have a shaman type person to guide you and as many of us will attest...it is worth trying anything reasonable and non exploitative. Over the years others have tried this route, unfortunately they met with little success. .

When suffering the unique, not describable pain that cluster headaches inflict it is natural and normal to grasp for whatever explanation makes sense at the time. We seek to understand lunar cycles, barometric pressures, previous wrongdoings, higher powers, trauma and infectious processes when seeking an explanation. In reality cluster headaches remain elusive in terms of definitive causes and universally effective treatments. Cluster headaches were first described hundreds of years ago before food additives and other entrapments of modern living. Speculation, deduction and personal anecdote dominate discussions among the afflicted. A sequence of biochemical events that result from a virus, parasite or bacteria theoretically may trigger a cascade leading to cluster-like headaches. It is theoretically possible headaches could continued to be triggered after the disease has been treated but this requires a bit of imaginary thinking. Viral encephalopathies are a completely different animal than C dif infections. C dif usually occurs when antibiotics have disturbed the bacterial balance of the gut. Time may tell if there is an infectious disease component to classic cluster headaches but it is more likely the headaches with an identifiable etiology like trauma, infection etc are mimicking clusters. This is an important distinction because in these cases treatment options discussed here are less likely to work. In the end information is good and worth discussing. Who would have thought ulcers would end up being treated as a bacterial disease? Or Lyme disease being a cause of human suffering? Or HPV contributing to certain cancers.

E tank in car, regulator and mask attached. I reach back to open the tank put on the mask and keep going once I feel the attack in decrescendo

Suggest sticking with the regimen. Its easy to engage in imaginary thinking about the ill effects of a new treatment. Once you are at steady state with the new substances the feeling will go away as you body adjusts. The least favorable thing you can do is not see a course of treatment through

I have O2 in my car 24/7 through all seasons. The easiest way is to treat it like a baby and treat it similar. Wrapped in a blanket behind the front seats, on the floor not the rear seat. Secure it enough so it does not roll or slide. You don;t want the tank flying around if you break hard or get hit. There are some rules about securing from the police/DOT but keeping it low in the car on the floorboards and wrapped so it doesnt slide meets the spirit of the law. Remember large numbers of people have lung disease and require constant O2 so its lugged around in large numbers (especially in Florida which is replete with old folks). Having it in your car is no big deal.

Steroid packs (medrol dose packs) generally are not sufficient for cluster headaches. usually you are better served by 60-100 mg of prednisone for 2-3 weeks followed by an optional taper. Of course you have to consider bone mass, underlying diabetes, lung disease or underlying immunocompetence. The bottom line is the typical dose pack is less likely to help someone in cycle vs a more aggressive regimen. Some of the horror stories surrounding steroids like acute vascular necrosis or cataracts are generally independent of dose and rare. Its always a risk benefit trade off.

If you are going to pursue a neurologist for verapamil you might consider a boost dose of steroids to help break the cycle. Verapamil is generally regarded as a preventative rather than a cycle buster. They can suck but they can be effective in getting you some rest and may arrest a cycle

Although the Practice of Manual Medicine is part of the Osteopathic Medicine scope of practice there is not evidence beyond anecdote to support its efficacy (long or short term) in the treatment of cluster headaches. As with all healing disciplines, there are fringe characters who make god-like claims when treating disorders that are poorly understood or have few effective treatment options.

I have observed a feeling of euphoria after attacks. Not sure if its a sense of accomplishment having survived, relief its over or a biochemical event. I do not believe it is psychosomatic. Nothing wrong with enjoying victory after outlasting the demon.

Very sad. The demon wins all others lose. I certainly understand exercising the option but it grieves me to know another person made such a choice. The collateral damage is beyond comprehension particularly her children. Many questions will never be answered. I hope she is at real peace.

Personally I never want to discourage the free exchange of information and ideas because you never know when the next "Flash moment" will appear. We are all aware that when folks get desperate they are vulnerable to any idea or snake oil salesperson. Evidence of this includes offering unsubstantiated surgical procedures at great cost and risk which people consider and actually agree to. In this particular situation I suspicion there may be a mental health issue in play. Whether the initial poster is attention seeking, manipulative or well intentioned their verbose nonsensical communication style speaks to a lost soul. Now that the story is out each person can judge it for themselves, take pity and move on.

Four hours of typing to say nothing. The parasite theory has been floated before and not well received for obvious reasoms not the least of which it is provable by “modern science”. Being withholding and secretive is the stuff of attention seeking and manipulators. Folks with quality information are generous and forethcoming. Batch set the standard for this and many others have done so to a lesser degree . I am happy you have resolved you CH issue but it seems you have other things to work on.

Yes the backside is ok but as others have suggested abdomen and thigh work. Just pinch the skin to raise it up. Even if you are 3% body fat there is no way you’ll go intramuscular. You should be able to get by with 2 mg injections if you get vials

Hmm very logical

Miss

Bummer that you have to investigate treatment options for this terrible condition. Sounds like you have someone who knows how to help you with your care. Please read through the info on the banner click above as it brings a lot of info together. Did the O2 work for you to abort headaches? Proper technique , flow rate and equipment are critical for its success as an abortive. Emgality has a fair amount of success but needs to be given at the higher dose (300 mg) for cluster headaches. Stick with it for at least three months before passing judgement. Oral triptans are ineffective for treating acute attacks while nasal has some success. Subq injections are the best but have a downside of rebounds and may extend a cycle. The D3 regimen has much promise, is safe if used as directed and has no downside. Busting as an option is worth considering but requires research and decision making on your part; it is definitely not for everyone. This site is a great resource and you will find excellent guidance from our members.

Having a diagnosis is very important because it excludes other conditions (Tumors, anatomic variations and treatable causes) and saves you from wasting time with treatments that have been proven not to work (oral imitrex, botox, surgery, most medications). You can also concentrate your self education efforts with a laser focus. Do not expect the medical establishment to take charge and treat you. You must direct your own treatment within boundaries you set. Cluster headaches are a diagnosis of exclusion which means after ruling out other potential causes all you are left with is cluster headaches. The criteria are pretty straight forward but overlap some other conditions. Many headache conditions respond to imitrex, very few respond to O2 therapy used properly. i am going to try and attach an article from "Up to Date" which is an online "go to" reference for many physicians and mid level providers. It is a peer reviewed, frequently updated, referenced resource designed to help experts and non experts stay abreast of treatment guidelines for many conditions. The attachment are treatment guidelines for cluster headaches and you might consider printing it off and bringing it to a provider or ER visit as you seek a partner to manage cluster headaches. The attachment is a bit large and may not be allowed to be updated. Maybe an administrator can help if it doesn't upload. You can PM me if you want and I'll email it if you wish. @CSA get a diagnosis. uptodateguidlines.pdf

In reality there is not much an ER can do for a cluster attack except get in the way of proper treatment. You had a typical experience and the ego of the PA likely got in the way. PA's generally practice under a physicians supervision and they may have protocols that require them to contact a physician if they have to escalate care (for instance use high flow oxygen) because the attending doc may want to be aware someone needs increasingly aggressive care (like heart failure or non responding asthma). The PA probably didnt want to bother the doc and get yelled at. Either that or they are just a jerk. Clusters can be occasional and or one off's. Only the frequently hit or chronics tend to hang around here. I have not had an attack in over a year and never get more than 100 yards from my O2 tanks (home, office, car, parents all have tanks and regulator)

For clusters the underlying cause(s) remain a mystery. There are a few credible theories and tons of speculation but understanding what exactly predisposes one to clusters and the mechanism of action remains elusive. Any of the treatments that work (with the possible exception of busting) are like a band-aid. They relieve the suffering but don't address the underlying cause. Whether by vascular constriction, reduced inflammation or tempered immune response the intervention is still focused on symptom relief rather than the underlying cause. Investigations such as imaging (CT, MRI), by definition, are to rule out other causes for the pain not to identify the cause of cluster headaches.