Pebblesthecorgi

Not exactly sure what you are getting at in the first sentence of second paragraph. There is a supreme obligation to honor the doctor patient relationship. It is pretty close to the confessional in terms of duty to the patient. In fact if the crime is already done (such as murder) the physician can not disclose the contents of the conversation if it was had during a visit for medical care. The only time there is an obligation to disclose is if the person is an imminent threat to themself or others. If a person came into the office obviously intoxicated they probably would not be allowed to drive home and law enforcement might be contacted if there is a safety concern. In the context of sexually transmitted disease there is a public health threat and a reporting obligation to the health department but that info can not be used by law enforcement or the criminal justice system. If someone said they planned to do themselves harm or threatened harming others there is a duty to report. If a patient reports doing drugs (recreational or to treat a legitimate medical condition) that info is privileged if part of the medical encounter. There is no duty to report drug use. Emergency rooms regularly see folks having trouble with illegal substances and they can not turn a person in. In fact such reporting would be an ethical violation and the physician could lose their licence. There is a concern with the electronic medical record and who sees the info in the chart. This is why one recommends asking certain info stay out of the chart. Despite efforts to keep things confidential the electronic format presents real confidentiality issues. I am confident if you have a regular doctor patient relationship and are being treated for clusters your doctor will remember if you have discussed alternative treatments. The doctor can not recommend doing something "off label" (thought many do with appropriate disclaimers) or illegal substances but interested practitioners may work with you on novel, self initiated treatments. By work with you I mean help you avoid drug interactions, review relevant data, give their perspective and provide support for potential side effects. The flip side is that a physician may not feel comfortable with their knowledge of what your doing or don't have the curiosity to investigate the "treatment". For whatever reason they may not want ot treat you or endorse the use of illegal options. Most of the time ths would be someone not interested in treating the problem in the first place.

Yes I was referring to D3 levels. It's pretty unlikely a person with normal kidney and liver function would get into trouble with the regimens. We are looking for a clinical result ( reduced or eliminated CH) so titration of D3 and other elements are the only way to know if the program works. There are the usual caveats about safety but lab tests are costly and I suspect one would get more push back about labs that oxygen. Having solid data is valuable but I would not let the lack a lab value prevent me from using what Batch suggests

Wow. Trackle is seeking advice and exploring options. No one needs a lecture to abandon conventional medicine or a physician who is actually trying to provide help. No system or provider is perfect (far from it) but if you find someone you can work with and is interested in helping its in everyone's best interest to have a dialogue. CHF made several good points about splinting doses and preventative mess. The oxygen info was also spot on. D3 works for many And has no real down side. I am not convinced in a non research arena labs are needed. First I would make an appeal to the insurance company about the oxygen. Insurance companies routinely reject claims as sport and part of a programmatic process . Once you start an appeal real humans start looking over the claim. If you have a medical diagnosis of clusters there is abundant medical evidence in the literature at the highest level to support high flow oxygen and injectable imitrex. You have to be persistent and it may not seem fair but its a battle that can be won. There are plenty of positive reports using MM, LSD and other non conventional modalities. I believe it is entirely within your right to safely try and use these methods. You do not need an ill informed persons permission. As a young mother be sure to do your homework, control "set and setting" the best way possible and have sitters (one for your child and one for you). Hopefully in separate locations. The discussion with your doctor is optional but if young and open minded it will not hurt. Ask if you can talk about something and not have it end up in your record. Then have a hypothetical discussion about alternative treatments. This can be important if you are on other medications or have a health history of something concerning. It would be unusual for an otherwise healthy person have a problem with a responsible dose of anything alternative. Most report low doses are effective.

From what I've read that etiology ( Jesus shot) is correct. I don't think his friend had clusters though. He seems to be using a one size fits all sort of approach to several complex problems. I believe the take home message is strong antiflammatory medications can be effective in certain folks with cluster headaches. The question remains what is the mechanism of action? If the mechanism can be figured out targeted therapy becomes possible. Personally I think the most promise is in the serotonin pathway which I believe DALT, MM and other analogues show so much promise in "straight forward" cluster sufferers. Why steroids are effective (which I believe they are) along with other anti inflammatory regimens remains a puzzle to me. Something goofy seems to happening in or near the hypothalamus or sphenopalantine ganglia though. Hopefully reasoned reporting of results and credible clinical studies will help discern what's going on and robust solutions emerge.

There is nothing magic about this concoction. It consists of three very commonly used medications. The steroids: dexamethasone and kenalog are used in all areas of medicine from neonatology to oncology. Rheumatologists and orthopedic surgeons inject these individually or as a mixture into joints every day. The B12 could be controversial just because most studies report no value in folk who are not clinically deficient. At worst it fit into a "no harm" category. Its good that someone like Bostonheadache doc is giving this a try. Clinical impressions from such a quality person will be very valuable. I find the term "Jesus shot" a bit misleading and it gives the injection a mystical connotation. There is nothing magic or spiritual about it and an open minded physician would likely be able to provide it locally if presented a logical rationale. Personally I would reserve the religious phrasing to reflect the experience provided by a bit too high a dose of other substances we discuss. I in no way am being negative about this treatment. Just want folks to understand if it continues to get positive reviews you can get it locally. I doubt most offices can do it for 300.00 though.

Prilocaine is in the same chemical class as lidocaine which is a chemical group called amides. Prilocaine is a bit lipophilic and similar to lidicaine. Lipids are fat and the brain is mostly fatty molecules so any med that is attracted to fat (lipophilic) will hang out in the brain longer. The epinephrine in local anesthetics is there for two reasons. It constricts the blood vessels which decreased bleeding at the operative site and lets the anesthetic hang around longer for pain control. I suspect its the concetration of epinephrine that is troublesome buy since it is a strong vasoconstrictor the effect must be secondary. There are alternatives to amides in local anesthetics which are esters and every dentist knows this. Just tell them you are sensitive to esters and they will use the alternative.

I personally find letting people know what's going on helps me manage things better. Letting folks know in a non whining, non sympathy seeking way that I may have to excuse myself. Tell them you don't want suggestions about what worked for who. No miracle migraine cures. Don't expect anyone to really understand what you endure. Just understanding you need time to suck oxygen, drink energy or inject. Most folks will provide lattitude for what you need to do while trying to live life as best possible. Try not to withdraw because then the beast wins. Live the best you can utilizing all resources possible. Being strong and positive is the best way to battle. Not easy but everyone is pulling for you.

Benzos as a class are metabolized in the liver but use a different enzyme system than psilocybin. But with all meds if they are used used regularly and in increasing doses one can not predict the effect on overall liver metabolism so caution is warranted. In the central nervous system benzos act on GABA receptors while psilocybin is thought to be largely serotonin. Benzos are often used to treat agitation from a bad trip. Mixing meds regardless of theoretically safety is a concern so caution and low doing is prudent. It might be wise to find a program to safely decrease dependence.

It sounds like you have a lot of pieces and now you have to fit them together. The supplement thing is pretty straight forward. Just follow the combination Batch has worked out. I am sure it will evolve but the foundation is solid. For a person with clusters oxygen works to abort. Oxygen has to be used in the prescribed manner. That means a pre treatment hyperventalation, 10-15 LPM flow of 100% O2 using some sort of non rebreather set up and continuing inhalation for 10 minutes after abort. Using low flow )2, poor breathing technique or stopping too soon will not give you an optimal treatment and may leave you with a false impression of oxygen's usefulness. Steroids in proper dosage should break a cycle pattern in its tracks. The problem is keeping the beast at bay. Steroids need to be sustained at fairly high doses for a while and then tapered. Using a dose pack doesnt give you enough steroid long enough and tapers too fast. A dose pack may help once in a while but doesnt have enough horsepower to help manage a bad cycle. If your doctor refers to the suggestions in "UP-To-Date" (a physician reference) the info there is good and very mainstream. Do your best to stay organized in your treatments so you have a solid idea of what works. Sometimes when things are bad everything and the kitchen sink gets tried and you end up being confused about what works. Some very good core treatment options have been described on this site and those folks have put the info together in an understandable way. Review it, make yourself a plan and keep track. You will make your own situation much better. Good luck

Agree with CHFather. Get O2. You need to consider prednisone at higher doses longer before the wean. 60-100 mg a day for a week or two then wean. Thats may be why you rebounded, too short on front end higher doses. Yes there are side effects but in my opinion they are not as bad as repeated hits. The Verapamil at 240 is fine to prevent but if you are in cycle you may need to go supra-constipation doses (960-1200mg)

I echo Echo. The presentation of diagnostic criteria is spot on. Pain is a perception and everyone experiences it and handles it in a very personal way. Sure there has to be scales to determine relative degrees of pain for treating acute situations like surgery but on an individual ongoing basis the pain scales may not help as much. Plus reporting pain is not a contest. It doesn't matter what others are experiencing or who has the worse pain. What matters is how the pain affects your ability to live, how you manage the pain and how you prevent it. If you meet the criteria for cluster headaches and you respond to treatments like oxygen almost certainly you have cluster headaches.

If they were frozen dehydrated you should be fine refreezing.. If they were fresh I would not refreeze as they will turn to mush (no pun intended). The jury is out on effectiveness but many store them in fridge or freezer (best vacuum packed) and report retained efficacy years later. Storing in honey is also popular. Reports of low non hallucinogenic quantities seem valid with a dried 1-2 gm seeming to do the trick. Tripping hard is not the goal or even desirable. The goal is to terminate a cycle and live well.

Generally your dose is very low but if it works it works. My experience is there is no such thing as a placebo effect with clusters. Your young age and naivete to the med may allow a low dose to work. Verapamil is a calcium channel blocker but is not the best at lowering BP in hypertensives it can also lower peak heart rate. Some folks are sensitive to it but generally speaking your body will adjust and your exercise tolerance will return on the med. Constipation is another common dose related side effect. I'd pursue the search for O2 Japan is a pretty medically sophisticated country and oxygen is commonly used in medicine, its getting the prescription that may be a challenge depending on your access to health care. A university medical center might be your best bet.

Contact your local visiting nurse association or equivalent. Airgas is basically a distributor and generally doesn't do "retail" on medical gases. You cn find a local O2 provider by calling a local hospital and asking to speak with a discharge planner. They should know all the ins and outs of oxygen especially cially in Florida which is littered with chronic lung patients needing O2. Also any pulmonary medicine group should have a friendly nurse who can point you in the right direction

At the risk of repeating a theme...Oxygen, D3 regimen, judicious use of imitrex and exploration of other methods (steroids, calcium channel blockers, MM, 5-MEO-DALT, and other things) Never give up, we know how much this sucks and wish you a short cycle, decreased intensity and much love. Don't let the beast win.

Traditional western medicine really isnt about cures for complex systemic conditions. This is especially true of autoimmune conditions like rheumatoid arthritis, connective tissue disease and diabetes. Cancer is often controlled, placed in remission and sometimes "cured" ususally using enormous resources. Its true for us Chusterheads as well. Nothing we discuss is a cure, we are searching for reliable effective treatments to control the beast. Unfortunately the low incidence of clusterheadaches, erratic treatment responses, late\poor diagnoisis and the quiet those afflicted possess put the problem in a low priority for studies. Bottom line since so few folks actually have CH there isnt enough money in it for big pharma to make a concentrated effort. This is why organizations like Cluster Busters are so important. By creating unity and understanding it allows custerheads the ability to organize, communicate and share information in an effective manner. Things like the conference and headache on the hill give us a voice to enlighten folks about the condition and provide access to effective treatments while studying alternative options in a rigorous way. Using MM and LSD as an example....When Timothy Leary went off the tracks and abandoned a scientific approach to studying the effects of hallucinogens the long term affect was getting these valuable drug banned and several generations of folks with PTSD, addiction, anxiety and headaches never had the opportunity to explore the usefulness of these alternatives. So while we do our "citizen science" applaud those who are doing the hard work of rigorous science and lobbying for better access to affordable treatments and empiric research.

Well folks will still have the option of growing their own. For all the advice out there it is cumbersome and harvest has a pretty long horizon. If (big if) a prescription pure tablet is available no doubt it will be highly regulated, may require an outpatient setting to administer and have lots of associated costs. My guess would be many would choose to seek "natural" sources just to avoid regulatory hassles. Just like the black market and home growers for marijuana has not gone away so would it be with MM. The difference is folks would have strong evidence to support their treatment strategies and may feel less threatened about criminal prosecution.

The best way to access MM is growing your own. The process is straight forward but it can take a while to get product. Getting things on the street presents trouble. Many have used a college aged kid or grandchild to find a source. When folks know what you want them for many try to help. They are seriously illegal though so great care is needed finding a trusted source. In the more socially accepted world high dose steroids for a brief time can help as does verapamil but the over 65 crowd has to be closely watched to be sure a heart rhythm problem doesn't occur; these are rare but must be checked for. Using 5-MEO-DALT (lots of info on facebook cluster group) has recieved a lot of positive results particularly as a preventative. It is borderline legal but you have to order from our Canadian friends. What the news reports regarding the positive effects of MM parallels many reports from the CH membership.

Next step Cluster Headache reports. It will be interesting to see how this gets spun as the usefulness of these alternative treatments are documented. The caveat at the end of the study emphasized the controlled conditions and drug purity. Went out of their way to discourage use in the natural state. Sooner or later the value will be documented in such an irrefutable way that no one will think twice about considering mind altering drugs to address an altered mind. It a positive thing and if you look there is almost nothing concrete published regarding negative effects of naturally occurring psylocibin

I found out this spring my Uncle (now 74) has had CH most of his life. Now I understand his personality better. He is a stubborn old coot and won't consider injections. He has access to O2 which helps and he found by accident in the course of his profession. To my surprise his main tactic is to have his wife hide the guns and drink. When I pointed out how little sense this made with alcohol being a trigger and potentiater he basically dismissed me. The same happened when I tried to discuss D3, MM, DALT, energy drinks etc. After reflecting I suspicion he would rather endure attacks the way he has his whole life rather than find out there was a solution and he has suffered needlessly all these years. On the other hand I benefitted from finally talking to someone who actually knew what I have been dealing with for a long time. It actually inspired me to go to a CH conference. The conference experience is surprisingly positive because you are surrounded by folks who "get it". What sort of side effects are you having with injections? CHfather has good advice for things to consider or revisit.

The link between low pressure changes or just pressure changes in general has never been proven. Most non headache suffering health care providers state it does not exist. Most of us who experience CH or migraines know that it does. Predicting frequency and intensity knowing the pressure is going to rapidly change is not really reproducible. In the end I don't think changing locales will help that much because you might eliminate a trigger but the condition still exists and hits will occur. When I researched this myself the migraine community had a list of "best places" to live 20 Major U.S. Cities with the Least Barometric Variation (days per year of >= .20 changes) Honolulu (0 days per year) Miami (4) San Diego (7) Los Angeles (7) Tampa (11) San Jose (14) Sacramento (18) San Francisco (18) Phoenix (22) New Orleans (22) Jacksonville (22) Birmingham (29) Houston (29) Atlanta (37) San Antonio (37) Austin (37) Memphis (44) Las Vegas (47) Little Rock (48) Charleston, SC (48) Not surprisingly, it is the southern cities which have the fewest days of variation. The “worst†list reinforces this theme: 20 U.S. Cities with the Most Barometric Variation (days per year of >= .20 changes) Augusta, Maine (128 days per year) Rapid City, SD (127) Montpelier, VT (117) Bismarck, ND (117) Boston (116) Colorado Springs (113) Denver (110) Billings, MT (109) Providence (109) New Haven (105) Cheyenne (105) Anchorage (104) Detroit (102) New York City (99) Buffalo (98) Minneapolis (98) Omaha (94) Chicago (91) Philadelphia (90) Baltimore (87) At the U.S. State Level, here is the complete list: Hawaii (0) Florida (14) California (18) Alabama (27) Louisiana (27) Mississippi (28) Arizona (33) Georgia (35) Texas (45) Tennessee (46) Arkansas (46) South Carolina (48) Nevada (59) North Carolina (60) Oregon (61) Kentucky (62) Missouri (68) New Mexico (72) West Virginia (73) Oklahoma (73) Washington (75) Illinois (78) Virginia (78) Indiana (80) Utah (81) Ohio (82) Kansas (84) Maryland (85) Iowa (85) Idaho (86) Pennsylvania (89) Delaware (89) Wisconsin (92) New Jersey (96) Colorado (99) Michigan (101) Minnesota (101) Alaska (101) New York (102) Nebraska (103) Connecticut (106) Rhode Island (107) Wyoming (107) Montana (108) Massachusetts (111) Vermont (112) New Hampshire (115) South Dakota (119) North Dakota (120) Maine (127) Source:https://www.securevideo.com/blog/2013/10/07/avoiding-migraines-resulting-from-changes-in-barometric-pressure/

Great news. Takes away he fear of flying if you have an effective counter.

Your response is not uncommon. If you think about it you are a torture victim. For the perpetrator of torture part of the strategy is making the victim suffer at the anticipation of pain. Classically when in cycle the pain comes in a somewhat predictable pattern so you become afraid to sleep or if you are expecting an attack you melt down as the time approaches. These are normal responses and I personally have had what you describe happen ove the years. It becomes a real problem when things threaten to interfere with work or responsibilities. I believe the best way to handle this is to actively manage the condition. What I mean is control as much as you can (O2, be prepared with meds both abortive and preventative) develop a systematic strategy for dealing with auras,shadows and attacks. Have a strategy worked out for escalating levels of pain so you approach it in a predefined fashion. For example I start with O2 for 12 minutes, add caffeine 250 mg if that doesn't help and as a last resort inject 2 mg imitrex if still kip 8 or above. When things don't work I have a mantra of telling myself to stay strong and there is more good than suffering most of the time. I refuse to let the beast win and know the pain wont kill me and the pain will end. When in cycle I know an oral triptan will hold off an attack if I have critical things to get done so I will take one prophylactic. THe literature says it doesn't work but my experience is that it does work. Thee is a price though because if you use too much triptan the cycle can seemingly be extended and some attacks seem worse. Steroids can help to bust a cycle but there are side effects. I hate them but they have saved me a couple of times. With the help of this board and many kind magnanimous souls I think the D3 regimen is safe and effective and should be tried following directions closely. 5-MEO-DALT has shown much promise andthough not for everyone, MM\LSD can be a godsend. All the info in Bob's handbook can help and should be explored in a systematic fashion. In the end what I am trying to express is use your knowledge and your strength of will to put the beast in a compartment, don't let it rule your life and reign terror on you. It will win sometimes but you csn find ways to control it and live normally most of the time. Learning to deal with it will make you the strongest person you know.

Fantastic. Will be anxious to see the results. Such grass roots work only happens when extremely dedicated folks stay on point over long periods of time. The whole cluster community is in your debt. A model for many chronic diseases.

In general, cluster pain is more concentrated to a single point and occurs in e same place near every attack. It is more intense and of shorter duration. Tends show up in a cyclic fashion (except for chronic of course). Triggers are noted but clusters wake you up at the onset of REM sleep in a time frame reproducible to the minute. When it gets bad the attacks seem to come willy nilly. Typically males in their mid life years. The number of women afflicted is much higher than has been thought but it still seems to favor males. Oxygen reliably aborts in most cases. Jury still out on oxygen in migraines. More reliable preventative methods for migraines. Many more people are affected by migraines, diffuse pain, can migrate a bit, favors females, triggers are common, last longer, cyclic with the exception of menstrual migraine. Cluster often get lumped in with migraines for insurance, discussion, and treatment purposes. They are not migraines or a migraine variant. They are in their own class and need to be treated and studied as such. Having said this the headache world is diverse, overlapping and subject to opinion based on personal experience. Getting a proper diagnosis and learning to discriminate the headache type is important so you can develop a personal treatment strategy.