Jump to content
ClusterBusters

Leaderboard


Popular Content

Showing content with the highest reputation on 09/10/2019 in all areas

  1. 2 points
    Batch

    Females and O2

    Kat, Gender has little to do with the efficacy of oxygen therapy in aborting CH. If used properly with hyperventilation at forced vital capacity tidle volumes either with 100% oxygen at 30 to 40 liters/minute with a non-rebreathing oxygen mask, hyperventilating with an oxygen demand valve, or by hyperventilating with room air for 30 seconds at forced vital capacity tidle volumes then inhale a lungful of 100% oxygen and hold it for 30 seconds then repeat this sequence until the pain is gone. In all three methods, the average abort time should be around 7 minutes with > 95% efficacy and it has nothing to do with gender. What most doctors and neurologists don't understand about effective oxygen therapy as a CH abortive, is oxygen is only half of the abortive. The other half involves blowing off CO2 faster than the body generates it through normal metabolism by intentionally hyperventilating for 6 to 7 minutes pushes the body into respiratory alkalosis. In simple terms blowing off CO2 by hyperventilating shifts blood pH to the alkaline side of neutral making it more alkaline, hence the term respiratory alkalosis. I need to point out that respiratory alkalosis from intentionally hyperventilating is temporary and harmless. It clears normally within a few minutes once returning to normal breathing rates. Respiratory alkalosis does several things that help abort CH. The first effect of respiratory alkalosis with an elevated arterial pH, is to slow the expression of Calcitonin Gene-Related Peptide (CGRP) and Substance (SP) by neurons in the trigeminal ganglia. CGRP and SP are responsible or the neurogenic inflammation and pain we know as CH. What also happens during respiratory alkalosis is elevating arterial blood pH in the lungs to the alkaline side of neutral, increases blood hemoglobin's affinity for oxygen. This enables blood hemoglobin to carry up to 117% of oxygen where breathing a little faster than normal elevates blood oxygen to only 99%. This super-oxygenated blood flow and low arterial pH does two things. It speeds up the breakdown of CGRP and SP and It also triggers triggers pH homeostasis when chemo receptors in the brain stem and aortic arch sense the low arterial CO2 concentration. These chemoreceptors signal the breathing control neurons in the brain stem to slow the respiratory rate. They also signal the heart to beat more slowly and arteries and capillaries throughout the body including the brain and trigeminovascular complex to constrict. All this happens to slow the flow of blood to the lungs to prevent the loss of CO2 and allow its arterial concentration to rise back to normal levels. While we're intentionally hyperventilating, this triggers the vasoconstriction throughout the trigeminovascular complex and this serves as a significant CH abortive effect. I can hear the wheels turning... WTF are Forced Vital Capacity Tidal Volumes? The answer is simple once you understand the terms. Tidal Volume = The volume of air (or oxygen) inhaled and exhaled. The air comes into the lungs during inhalation and goes out when exhaling, just like the tide comes in and goes out. Vital Capacity = The maximum amount of air a person can expel from the lungs after a maximum inhalation without thinking about it. Forced Vital Capacity = By doing an abdominal crunch, tightening the abdominal and chest muscles as in doing sit-ups at the end of a forceful exhalation, squeezes out an additional half to full liter of exhaled breath highest in CO2 content. If you hold the abdominal crunch and chest squeeze for at least a second, your exhaled breath will make a wheezing sound. Try it now and hold the squeeze until your breath makes a wheezing sound. Accordingly, hyperventilating at forced vital capacity tidal volumes pumps CO2 from the blood stream much faster than "normal respiration." Now for the proof this method of oxygen therapy and breathing techniques makes oxygen therapy very effective with an average abort time of 7 minutes. We conducted a pilot study of this method of oxygen therapy (hyperventilating with 100% oxygen) with seven CHers (6 CCHers and 1 ECHer, six men and one woman) in 2008. Four of the CHers used an oxygen demand valve and the other three used a Flotec 0-60 liter/minute oxygen regulator set a a flow rate of 40 liters/minute with a Cluster O2 Kit mask from CH.com equipped with a 3-liter reservoir bag. Abort times with either method were the same. Each of the seven CHers collected abort time and CH pain level at start of therapy for every CH aborted for a period of 8 weeks. This came to a total of 366 aborts with this method of oxygen therapy. 364 of these aborts were rated as successful with a complete CH abort in 20 minutes or less for a success rate of 99.4%. The results are plotted out in the following graphic. The average abort time for these 364 aborts was 7 minutes. One of the pilot study participants collected abort time and pain level data for a week while waiting for his oxygen demand valve, using a disposable non-rebreathing (NRB) oxygen mask at an oxygen flow rate of 15 liters/minute. As you can see, the demand valve method (hyperventilating with 100% oxygen) results in CH aborts 3 to 4 times faster than using a disposable NRB oxygen mask at a flow rate of 15 liters/minute. We also discovered an interesting phenomenon that the higher the CH pain level, the longer it took to abort to abort the CH. This has never been reported in any of the previous RCTs or studies of oxygen therapy as an abortive for CH or Migraine. For reference, I hold a patent on the oxygen demand valve method of aborting CH. I've also over 15 years training in Aviation Physiology primarily involving oxygen breathing systems and their use in flight. Bottom line, hyperventilating at forced vital capacity tidal volumes with 100% oxygen or hyperventilating with room air at forced vital capacity tidal volumes then inhaling a lungful of 100% oxygen and holding it for 30 second then repeating this sequence 6 more times for an average total of 7 minutes are equally effective in aborting CH. Hope this helps. Take care, V/R, Batch
  2. 1 point
    2020 is upon us, the Medicare Part D drug coverage gap did not go away as promised it increases again. Oxygen is still a NO for cluster headaches. Time for us & those who care to barrage our reps & CMS with calls, letters etc.
  3. 1 point
    FunTimes

    Melatonin and clusters

    If melatonin is causing you other issues then yes I would stop taking it. if all you are dealing with at night without taking it is the cluster then at least you know what your dealing with. Mix in anxiety, nausea and vomiting with clusters and that sounds like a real party...
  4. 1 point
    kat_92

    New, English and Confused .

    Hey there! i am new to CH as well and to cluster busters. I’ve found that the people on this forum are super helpful and comforting to newbies like us. Unfortunately, the insurance situation in this country is atrocious. There really isn’t anything you can do about it. Even if the doctor, who has experience and went to school prescribed something they can deny it if they want. I’m sure some of the more experienced members will be chiming in soon regarding their oxygen set ups etc. I’ve been relying solely on the vitamin d regimen. There is a lot of informative information on that thread regarding vitamin d and reduction in clusters. If you go to the first page of general board there is a vitamin d thread. I’d purchase the vitamins as soon as possible and get started. Best of luck kat
  5. 1 point
    FunTimes

    Energy drinks

    Being negative is all part of the game, it happens to me all the time. I am chronic so I do not have cycles but deal with this every day every year. I try to take a look at myself from the outside and find it kind of funny that I was chosen to deal with this and was chosen because I can deal with this. I am a big fan of the 5hr energy drinks or anything similar off brand type drinks like this with the caffeine and taurine. Walmart and dollar general both sell drinks like this. For some push ups, jumping jacks or some other vigorous activity can also help lessen the pain at the start of the attack. Oxygen is the biggest help, the faster you can get to it and the faster you can fill your lungs the better. Do you have the cluster mask and a high flow regulator for your tanks? Cluster headaches suck but you are in the best place to fight them. read this site as much as you can and ask questions. Look into the vitamin D3 like mentioned by the pros above and read up on busting it could change your and your partners life.
  6. 1 point
    jon019

    Females and O2

    …..part of a clusterhead's tool kit...carry with you always....
  7. 1 point
    Freud

    Emgality for episodic

    And thanks for the emgality update. I’m seeing bostonheadachedoc tomorrow and we’re going to talk about emgality. I’m pretty sure you’re not on the right dose. It’s a double injection first dose and one injection every month there after. My former doc said it can take months to work so don’t give up yet. All this info is based on his edu of me as well as a little reading. But I’ve heard docs writing it all kinds of crazy ways. 3 injections the first month... I’ll get to the bottom of this tomorrow, I’m fairly certain BHD was one of the investigators/ sites but I could be completely wrong. He may have just had patients enrolled in the study...
  8. 1 point
    Pebblesthecorgi

    Females and O2

    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.
  9. 1 point
    MoxieGirl

    Cluster Headache Poem

    No Escape Today is like any other, Yesterday, today & tomorrow, all blur together. Day in and day out, everyday the same, I wish I could escape this game. The Beast visits most when least expected, My face drains of colour, and I feel quite infected. Into one eyeball, always just the one, the Beast comes, Blinding and piercing like I’ve been poked hard, with a thumb. My eye seems to freeze as if turned to ice, And the pressure builds as if placed in a vice. My nose starts to run and my eye begins to tear, As my body is gripped with fear. Red hot nails, they pierce and twist in my eye, The burning is such that I wish to die. Sharp blades cut and rip through my skull, As I pace the room and bang my head on the wall. I can feel my cranium crack, As all my world turns to black. For one hour or maybe two, How long it really lasts, I dare not tell you. For all that time, I pace and I walk, Sat on my bed, back and forth I rock. I suck on oxygen and drink caffeine, I can be quite snappy and downright mean. But eventually the nails are removed, as are the blades, And the pain within, all but fades. I am drained, I am spent, My energy is at zero percent. I need water, I need food, But instead, I lay here unable to move. I take one deep breath, and maybe two, Before the next symptoms ensue. Then the crying truly begins, As my body shakes from my bones to my skin. I am racked with hot convulsions in wave upon wave, To this terror I am now but a slave. Eventually, even this fades to a whimper, As my body begins to shiver. Wrapped in a blanket I raise myself up, Sloshing some water into a cup. Today was like any other, Yesterday, today & tomorrow, they all blur together. Day in and day out, everyday the same, Oh, how I wish I could escape this pain.
  10. 1 point
    Brain on Fire, Great idea, wrong audience. I teamed up with two Top Gun heavy hitter neurologists from American Headache Society, Dr. Deborah Friedman, MD, MPH, FAAN and Dr. David Dodick, MD in 2009 to overturn the CMS non-coverage determination that prevents Medicare beneficiaries from obtaining oxygen therapy as an abortive for cluster headache. We assembled what we thought was significant body of medical evidence attesting to the efficacy and safety of oxygen therapy as a CH abortive. It included all the known studies, papers by Dr. Lee Kudrow, MD and other noted neurologists with hundreds of years accumulated experience with oxygen therapy as an effective abortive for patients with CH. Unfortunately, the unelected, monkey-ass bureaucrats at CMS/OCSQ (Center for Clinical Standards and Quality) rule the roost when it comes to non-coverage determinations. They wouldn't listen to real medical evidence and logic if it was coming from the burning bush or bit them on the ass. They methodically disqualified every study provided for not adhering to all the latest rules of medical evidence then pronounced there was insufficient medical evidence to reverse the existing non-coverage determination for home oxygen therapy for Medicare and Medicaid beneficiaries with CH. Congress and your local representatives? NFW! The probability of finding meaningful support for our cause in Congress in the form of favorable legislation for oxygen therapy, ranks right up there with finding a snowflake in hell. As soon as most politicians are elected they get a lobotomy followed by a chemical memory eraser. They have only one goal after being elected... Getting re-elected. Re-election requires money and you'll never guess who fills re-election campaign war chests with the most money. The Pharmaceuticals/Health Products industries lead by the Big Pharmas to the tune of $4.2 Trillion dollars spent on Congress over the last 20 years. https://www.opensecrets.org/lobby/top.php?indexType=i&showYear=a And, of course, the Big Pharmas don't like anything used in healthcare if its not patented for profit. Oxygen is a USP so cannot be patented. Big Pharma's solution to this problem is to have their K street lobbyists write legislation for Congress that makes it difficult to obtain home medical oxygen. This legislation is written vaguely so as to allow government agencies like HHS and their minions at CMS to write regulations making it more difficult for a physician to prescribe oxygen therapy than an Rx for opiates. Their final hammer is to make coverage determinations on what medical treatments CMS will cover. Our only solution it to go to the top and the Twitter-in-Chief, President Trump. The best way to do this is to contact the White House at the following link. https://www.whitehouse.gov/contact/ It will give you the option of "Contact the President" or "Help with a Federal Agency." Select the second option, fill in the blanks then in the final blank "What would you like to say" start out with the regulations governing home oxygen therapy for cluster headache sufferers are too restrictive to the point Medicare and Medicaid beneficiaries with cluster headache are not covered. Point out that President Trump made a promise to the American people he would help cut the red tape and restrictive regulations that make things like home oxygen therapy so costly and difficult to obtain. Give your own story in your own words like how you're forced to use Triptans like Imitrex costing $900/month for the nine shots per month covered under Medicare as an abortive but the estimated $100/month for home oxygen therapy is not covered. The average cluster headache sufferer has three of these terribly painful headaches a day, 90 a month, yet Medicare will only cover relief for 9 of these terrible headaches a month with Imitrex. Home oxygen therapy would cost much less at $90 to $100 per month and could be used for all cluster headaches not just 9 a month with Imitrex, then be forced to suffer agonizing pain during 80 more of these cluster headaches without any relief. Ask why an expensive pharmaceutical like Imitrex is covered as a cluster headache abortive for Medicare and Medicaid beneficiaries, yet USP oxygen is not. Ask if existing legislation and regulations governing coverage for home oxygen therapy has been influenced by Big Pharma to their advantage in the market place? The simple solution is to make home oxygen therapy an OTC item. This would eliminate burdensome regulations, increase competition and ultimately lower the cost of home oxygen therapy. The savings at HHS/CMS would also be huge as a large part of the CMS budget is spent administering prescriptions for oxygen and the durable medical equipment associated with home oxygen therapy for Americans with COPD. The American Lung Association (ALA) thinks there may be as many as 24 million American adults living with COPD and that doesn't count Americans with Bronchitis or Emphysema who also need supplemental oxygen. Again, use your own words. If one or two up to maybe five CHers go to this White House website and complain about home oxygen therapy, it's likely nothing will happen. If the number of hits goes above 50, they have tracking systems that will flag this topic. Then the odds of meaningful action go up big time. Take care... and Take Action. V/R, Batch
×