Pebblesthecorgi

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.

I believe you should rate pain at the time of occurrence. Mental strength and inner spirt get you get through it and the memory of the pain departs quickly. If it didn't the haunting memories would increase suicide rates even more. If we held on to the memory of actual pain I doubt most women would have more than one child. The cluster survey reinforced how relatively bad the pain is. I recall them reporting gunshot injury and loss of limb were worse and those only happen once not a couple hundred times a year. If you have not taken the survey you are encouraged to do so. It is a very comprehensive instrument and you will gain some insight as you take it. Most important it will provide understanding to funding groupsntomsupport research. My personal experience with rating and handling the pain parallels mine exactly. The post attack perception is also similar. I do believe our ability to handle other painful situations is improved because of the CH experience. There's not much one can't handle after dealing with cluster cycles. This includes kidney stones, gout attacks, torn body parts, extreme exercise and extensive tattooing. An increased pain tolerance may not be so good as one may put up with or ignore significant warning pain and end up with permanent joint, heart or renal damage. Delay in treatment because the pain a non cluster person would seek medical care for gets ignored by a CH warrior who knows how to suppress pain better than most. No proof, just personal speculation.

You are fortunate it works for all the reasons DD states. It would be nice not to have to be friends with Airgas

Yes, flying is a great source of stress for many. Austin this year is the only thing that got me to an airport. There are a few options. Make sure your Vit D program is active, check the weather for predicted pressure changes and stability (if its going to be volatile you need to make sure you have enough meds), If you depend on O2 there may be a provider you can pick up a tank from on the other end. If your supplier is part of a large organization they may be able to help. Personally prior to busting and DALT I took an oral Imitrex or Amerge just before hitting security if I was in cycle.. They say it is not for prevention but for me it works in select situations (air travel, gotta sleep a few hours, demanding work schedule). Also I keep a loaded syringe taped to my chest and inject if I get hit. TB syringes and injectors are ok on planes (diabetic carry similar stuff everyday). Being proactive and prepared can permit comfortable air travel. Personally I still hate it and avoid at most costs.

Tablets are generally worthless as a cluster abortive. You might ask about getting vials and use a TB syringe to inject. This is much less expensive than cartridge systems. The cartridge system is 6 mg though it can be hacked to get multiple doses. Many clusterheads can get by with 2 mg dose so multple doses from a vial help make it effective. Imitrex can cause downstream problems with prolonged cycles or rebound headache in some cases so even when effective try and avoid unless the O2 fails. I can't directly answer if the injection prolonged the cycle but it would be hard to imagine why since it is basically a nerve block and doesn't attack at the receptor level.

If you are pain free and only experience shadows I would not get the injection and bust. Some folks use mm in intervals at lower doses to prevent; some do a bust when shadows start up. I dont think the injection would interfere with the bust even if it has steroid in it. The issue becomes figuring out what works: mm, injection or D3. We tend to pile on therapies when it gets rough and never really know what helped for future reference. My personal experience with depakote was it had to be in high doses giving constipation a new perspective, muddled my thoughts and didn't substantially help. Verapamil has to be in higher doses and also contributes significantly to constipation. Curious, was the sumatriptan oral, nasal or sq?

Good advise has been provided but I will kick in my 2 cents. First proper diagnosis is essential and there are several types of severe headaches which have some subtle differences. Personally I believe if you don't get some abortive relief from properly administered oxygen the diagnosis should be questioned. For instance some headaches in this class respond to indomethacin (a strong non steroidal anti inflammatory in the same family as motrin) but not so well to oxygen. Of course there are exceptions to every rule but assuring the proper diagnosis is essnteial to long term treatment pathways. It sounds like you have a good doc to work with but remember this is your condition (and a rare one at that) and your life so it is good you are seeking credible advice and experience. Don't be too leary of steroids because they do have a role when used properly especially when trying to stop a bad cycle. They do have side effects but under knowledgeable care they can be a life saver. If you are young and female its particularly important to guard against bone loss. The advice above is good and you should consider the options. This site is replete with great suggestions and you should try them systematically until you find a combination that is effective. The most common reason treatments fail is inadequate doses, too short a duration of a regimen and using treatments that may work against each other. Keep a journal of what you are doing including dose and duration. There are a few apps that can help with this is app savvy. Be prepared when you go to the doctor with a list of what you have been doing, how well it works and what you would like to try next. Be in charge of your own care and so long as it has a legitimate rationale you will find a doc who will shepard you through this challenge. Stay positive and strong

The web site if pretty non specific about what you are getting. The mouthpiece/valve configuration looks a bit like a demand valve. Would be nice to know how many cubic feet of oxygen are stored in the 22 oz container, how the valve works and how it compares to a non rebreather and whether it is FAA approved. It is marketed as a boost for work out recovery, altitude sickness treatment , something to sharpen focus and a hangover treatment. The research section seems to extrapolate a bit and seems to take liberties with the studies focus. That said if it is FAA approved it might be a good thing for those of us who fear flying. Certainly an expensive alternative to folks who need a lot of O2. You can get very small tanks from medical O2 providers that are good for 20 min at 15 LPM. A couple fit nicely in saddlebags.

Don't worry about the melatonin and xanax together if taken in prescribed doses. They have different mechanisms of action and shouldn't potentiate each other. Theres not enough O2 in those Big Ox O2 to be cost effective. Might get you through a hit but may run out before it kicks in.

Testosterone replacement in men is pretty controversial. Interpreting lab results is problematic because of wich version of testosterone is being reported and how that level relates to hormone bound to sex binding globulin and plasma. "Normal" levels are also age dependent. Its an emerging area of medicine that has a bit of hocus pocus and treatment standards are not uniform. Some practices and franchises are exceptionally good a the wallet biopsy. Some underlying medical conditions (cardiac, high blood pressure clotting) may be affected by supplemental testosterone. Also a good practitioner will include some blocking agents against estrogen and hypothalamic suppression so the testicles dont shrink and there is no breast development. With those caveats Testosterone replacement has a role in mens health especially in recovery for athletes, libido and sexual performance. Would suggest it be part of a comprehensive medical care with your primary provider. Also it way cheaper to give yourself the shots and save the time and cost of the office visit. That said the data on testosterone replacement and clusters is neutral with no evidence of harm or benefit.

I agree with CHFather. Lithium is a tough drug and requires legitimate monitoring. Third line therapy in most regimens. Remember CH cases are fairly rare and long term chronic or episodic is a small sub group. This means few physicians will see many cases and their knowledge is based on the few cases they see. This is a situation where the intellectually curious doc will seek out the most current knowledge and second opinions rather than fall back on antiquated knowledge or anecdotal results. Which brings me back to my strong belief you must be your own advocate, educate yourself to the best of your ability, don't be a victim, act systematically and responsibly and partner with a physician who will listen and work with you.

Yes I agree with what you report. Not to be a snob but the facebook group is far more diverse and less focused than the exchanges here. For our new friend we forgot to mention the D3 regimen which seems to help many. So to answer him and dealing with the current cycle. Avoid imitrex once you get set up with O2 (essential for true cluster heads), may need aggressive dosing with steroids and verapamil, consider starting the D3 regimen, hydrate like crazy. Once you get some rest and relief wean off blocking agents and consider either conventional prophylaxis or busting. There are lots of other variations in the theory and implementation section and they can be tried systematically.

Lots of evidence for O2. First line therapy in every credible medical reference. You can find info on PubMed or ask your doc to look up clusters on Up-To-Date. Pretty indisputable in this day in age. A really bad cycle might need a short course of high dose steroids (60-100mg/day for 2 weeks then taper) and Verapamil (960-1200 mg) if you can tolerate it. The other option is busting but the horizon to harvest is pretty long if you are acute. Seeds or DALT might be a consideration but can't speak to those for a bust. Only hear about prevention. Good luck. O2 is the cleanest way to handle it while keeping other options open.

This article and permutations of it have caused a stir even though the data was presented several years ago. There have been a couple of population based reports about anticholinergics (usually older antidepressants or incontinence meds), antihistamines (harder to track because they are over the counter) and proton pump inhibitors (for gastric reflux) regarding memory issues and dementia over the last five years or so. These studies are generally done by data mining large databases maintained by comprehensive insurance products (ie Kaiser like entities) or government run insurance product (ie Scandinavian countries). These studies are done retrospectively using sophisticated software to tease out information. The problem with the studies is the classic "shit in, shit out" conundrum because they depend on questionnaires and diagnosis data which is never substantiated. The numbers of individual data mined are large so the studies seem statistically powerful but so many variables are not controlled. It has to be taken with a grain of salt. I don't mean to dismiss the studies out of hand and of course my simplistic explanation will rouse some objections but generalizing these sort of studies does a disservice to many folks who benefit from certain meds. The other problem is implicating old fashion, readily available, inexpensive medication in problems like memory and dementia pushes folks to newer, less available, much more costly drugs which have not been around a long time and can cause who knows what long term problems. We have to start somewhere when studying the things we put into our bodies but many of these data mining studies get picked up by the popular press and the results are extrapolated to support one bias or another. Often these large studies inspire a specific line of controlled research which can definitively (or at least better) define the risk of using a medication. This is why studies of things like Psilocybin which Clusterbusters supports are so important. Facts gathered in a controlled fashion help dispel myths and give vetted information to consumers.

I believe O'Leary's book should be mandatory reading for folks and their sitters considering alternative therapies. It is concise and pleasant to read. In few areas does the philosophy of "knowledge is power" apply more. At the end of the day being prepared to manage side effects and have a personally powerful experience while taming the beast knowledge and understanding always wins out. There is much written about the medicinal value of the alternative treatments we consider but O'Leary's primer is by far the best and most accessible. In real life the guy ran a muck by a very strong in your face approach but the core message was correct. It is wonderful traditional research is underway and perhaps in my children's lifetimes these therapies will be readily available, accepted and proven efficacious.

No documented evidence of blood clots related to thrombotic (blood clots) or embolic activities related to Triptan's. In fact the cardiovascular evidence against Triptan's is pretty weak in general. At least in context of individuals who do not have cardiovascular disease. Blood clots or pulmonary embolism (blood clots traveling to the lungs) are often related to decreased activity (bed ridden), surgery especially in the pelvis or legs or connective tissue disease. Clots occurring without obvious risk factors are usually genetically predisposed. They can test for the ones we know about but we don't know everything. Sounds like your husband is a lucky guy. Pulmonary embolism is a nasty thing but in those that survive completely treatable. A good thing to follow directions precisely because treatment carries risk if not followed closely. Good luck.

Most find stress to help folks with cluster headaches. This may be due to higher levels of naturally occurring steroids or even endorphin's. Some folks report attacks when stress dissipates. That said muscular responses can be a "chicken or egg phenomena" The pain and "headbanging" may result in musculoskeletal changes. Given the common experience most cluster suffers share (after all it is a diagnosis that is often based on classic symptoms) it is unlikely neck tension which is readily detected by exam has a causative role. More likely an individual reaction than an instigator.

Color blindness, at least red green version) is an X linked recessive which basically means a male only phenomena passed to the person by the mother. . It affects about 10% of the male population. Personally I am red green color blind. I have an uncle who is now 80 and has a cluster background. He is a paternal uncle so the color blind genetic link would not apply. I have no idea how folks survived these attacks without O2, imitrex or other modalities. I can state with unequivocal confidence my tenure on this planet would have ended log ago without available treatments. As we get a better understanding of the human genome I suspect it will be possible to get a better handle on the genesis of this affliction. Most likely it will prove to be multi-factorial with co-factors. If it were simple it would have been solved long ago.

When you speak to your doctor ask him or her to look it up on "UP-To_Date" which is an online reference many physicians use. O2 therapy is well documented and a first line standard of care treatment option. Any properly done literature search or google search for that matter will support this. If they are unwilling to be enlightened I suggest your pursue another caregiver.

You need to stick to a consistent course of action and keep track of results. No sense going to the doctor accepting a recommendation and then not following through. You will never know if it works and your physician will be in a position of not knowing compliance played a role in treatment failure (or the alternative treatment may work, you get better and your doctor thinks it was the steroids leaving a false impression of prescription success). If you don't agree with the doc let them know and see if there are alternative treatments that you both can agree on. Once you choose an alternative path anything traditional can be blamed for contributing to failure whether its accurate or not. You can't start and stop the steroids to accommodate the bust because physiologic and mood changes can be problematic. Once you start a reasonable treatment course follow through and if it doesn't work don't do it again. Happy to hear you shook off the self destructive mood, never let the beast win.

Hortons is an eponymous designation for the unilateral eye changes seen in a cluster attack. Depending where a person trains they may use the term cluster headaches and Horton's headaches synonymously.

Wow, sorry to hear about everything that is afflicting you. That is quite a challenge. You must be a very strong person. It is hard to tease out all theelements in your well written description. It sounds like you have partnered with some good folks to help sort things out. If you haven't been to a headache clinic or a neurologist who specializes in clinics it is something to consider. When you have mony different types of headaches keeping a log headache diary will be helpful to track and possible reveal patterns. Although there is some overlap in the treatment of migraines and clusters they are different animals mediated by distinctly different pathways so treatments won't necessarily be the same at any one time. The resolution of an attack with oxygen would favor calling the headache a cluster although there is some suggestion that migraines may respond to oxygen too. Generally that takes more than 10 minutes (for a migraine). I suspect the change in breathing and blowing off carbon dioxide may play a role in oxygen and migraines too. You will find lots of help and support here from very experienced folks but stay on track with your provider(s) because it sounds like you need a firm diagnosis and a treatment plan based on multiple contingencies. Welcome

In my home, in my office in my car. Its cheap, effective and works best if you get on it early. The tanks might get dusty but they are a security blanket. Better to hit it early and not have needed it than wait for the beast to set up. Multiple regulator are cheap on Ebay, Amazon and other sources so don't rent one if you can help it. Usually the supplier (if they know the diagnosis) will give you 4-6 tanks to start. Some folks buy a big M size tank to handle the volume while in cycle.