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Showing content with the highest reputation since 11/05/2019 in Posts

  1. 4 points

    Kings of pain

    ....no mirrors in yur house bro?
  2. 3 points

    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
  3. 2 points

    Females and O2

    yme (great handle!), I'm very sorry that O2 doesn't work for you, and I am assuming you have tried all the upgrades (higher flow, better mask, different breathing technique, etc.) that have turned that situation around for some people. I'm imagining that means you have to use triptans to abort attacks, and I just wanted to be sure you know about splitting Trex injections to use less with each one. There's a file about it here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Or some people get it in vials with syringes so they can measure out their own doses. Sorry if this is old news to you, but thought it was worth mentioning. Same with busting (the blue "New Users..." banner at the top of each page). I'd feel remiss if I didn't mention it, but you might already know about it.
  4. 1 point
    Brain on fire

    Thank you for your Service

    and sacrifices. Apologies I'm a bit early, I have many to thank tomorrow.
  5. 1 point

    Thank you for your Service

    Lest we forget. John McCrae, May 1915 In Flanders fields the poppies blowBetween the crosses, row on row, That mark our place; and in the sky The larks, still bravely singing, flyScarce heard amid the guns below.We are the Dead. Short days agoWe lived, felt dawn, saw sunset glow, Loved and were loved, and now we lie In Flanders fields.Take up our quarrel with the foe:To you from failing hands we throw The torch; be yours to hold it high. If ye break faith with us who dieWe shall not sleep, though poppies grow In Flanders fields.
  6. 1 point
    A diagnosis (sometimes a temporary differential diagnosis) is required to prescribe. From what you shared, it sounds like 'the multiple neuros and results of imaging' failed to provide the info you need to make informed treatment decisions for yourself... If you believe that is true you may want to get medical records & imaging study results. Over the years many have learned we must advocate for ourselves. I am often shocked when people take meds with no clue what active diagnoses are in thier own medical records or what (specifically) the meds are prescribed to treat.
  7. 1 point
    I am glad you are no longer having pain. Though it is unlikely a mucus retention cyst was causing cluster headaches anything is possible. One could develop theories on why cyst removal may be helpful. Another possible consideration is you may be enjoying a “side effect” of the anesthetic agent used for surgery. You might want to get a copy of the anesthesia record to see if propofol, steroids or ketamine were used. Any combination of these agents has the potential to offer relief for cluster headaches.
  8. 1 point


    @jimmys - I'm still here, and I'm cluster free after using Emgality for 2 consecutive months. I went from 5 hits a day, to about 2, to none over a few weeks, then totally pain free. I did not take it the 3rd month, and am still pain free a month in. I have also tapered off all Verapamil, etc. I did not have any side effects to speak of. Get in touch with me directly with any questions and good luck!
  9. 1 point


    jimmy', your best bet is to type Emgality into the search bar at the top right of the page. You'll see more responses that way. I think they have been mixed: little or no success for some, good results for others. Important to keep in mind that people for whom it worked probably are no longer here or might never have been here.
  10. 1 point
    You really haven't said much in your posts here, at least as I remember them, about your symptoms. You mentioned that you have an atypical pattern during attacks, which I think you said come in waves. That and the Advil (and your now trying O2) is about all you have mentioned, at least as I remember. What medicines or treatments have you tried? Do you have these kinds of symptoms? Excruciating pain that is generally situated in, behind or around one eye, but may radiate to other areas of your face, head and neck One-sided pain Restlessness Excessive tearing Redness of your eye on the affected side Stuffy or runny nose on the affected side Forehead or facial sweating on the affected side Pale skin (pallor) or flushing on your face Swelling around your eye on the affected side Drooping eyelid on the affected side
  11. 1 point

    New to the group - some observations

    Signals I pay for my 02 out of pocket, it was cheaper for me in the long run. My insurance company has a set price on how much a tank is but when I asked about paying for it on my own the price dropped about $250 bucks. I have a company that I found just outside of Philadelphia that I get tanks dropped off at my house the day after I call in my order. They started me off with 2 M60 and i think 4 E tanks, due to the lack of record keeping and the delivery driver being understanding/not caring I have a good stock pile of tanks now. Be ready for a fight, it took me more then a few months of yelling at and arguing with different 02 shops and vendors to get what I have now. As far as busing goes you can become a farmer and grow your own at home. This is not the portion of the board to talk about it but read up and sk questions and you will have a tun of help and support here.
  12. 1 point

    Question about fatigue

    It lowers your blood pressure. That can be too much. What is your BP currently? 240 per day lowered mine to 80/60 at times. Needless to say, I quit taking it. I could not take enough to help. When it gets too low, I get very fatigued. A cycle will make you tired as it moves along. Especially if you get nocturnal hits. They keep you up at night and then you can become prone to getting a hit if you try to nap. The D3 Regimen is awesome! It helps many patients on this board. Some go pain free and others get lower intensity hits and slower ramp up times. Both are a huge help in controlling the pain.
  13. 1 point

    anyone else entering fall cycle?

    I am an Equinox person. Fall one in September - the 22nd or so. Never changed sides. At first they lasted a month or six weeks. Then it got to where they lasted till the Spring Equinox. And there was one year where I had surgery and the doctor was not at all helpful with the storm he stirred up in March. Not a Neuro and did not care. That one lasted eight months, not the normal six. Just keep in mind that they morph over time, They can change for the better or they can change for the worse. If you meant that they began in September rather than November, that fits a common profile. The Equinox. This mess can change sides and dates too. It just changes on us! I highly recommend the D3 Regimen!! It really helps a lot of CHer's.
  14. 1 point

    Females and O2

    …..part of a clusterhead's tool kit...carry with you always....
  15. 1 point
    About 1.5y ago I have posted that I managed to completely eliminate my CH by changing my diet. Please read my original post , by clicking my user name . I was on my diet for about 15 month without a single CH. About 3 month ago , I started to feel comfortable that CH are gone forever and started to eat everything again : fast foods, chocolates etc About 2 month ago my CH were back , on daily basis. That lead me to believe that my poor diet was triggering the CH. So right away I went back to my original diet . After 1m on my diet (details in original post) My daily CH disappeared once again . I would be curious if someone tested this theory , maybe there is some filler , chemical or coloring that is a huge trigger in our food. It may take about 1m for it to work , based on my limited experiences. I also eliminated about 6m ago vit D,Mg and all the other supplement , bc I thought that there might be fillers as well that could trigger my new attacks. I hope some one tries it. It is also important not to have any cheat days during the test. Best regards.
  16. 1 point
    So I decided to abandon my special diet just to test if it was the end of a cycle responsible of for the lack of lack of CH. I ate some fried chicken and potatoes. 1m after finishing I had a CH. really bad one. For the next 3 days I went on a diet again , I only ate home made baked potatoes with little butter . No headache. day 4 still no CH,,on a diet. I would really like to get more people interested in this approach. I'm not selling anything and never will, but I think that people who get a CH 1m to 2h after eating might benefit, bc there it seems food related.
  17. 1 point
    CH is often misdiagnosed as sinus headache. More than a few people with CH have had sinus surgery because that was thought to be their problem when it wasn't. Evidence is growing that pollen/allergies have an effect on CH, and I would imagine also on sinus headaches, so there could be a false correlation there. Do not fully rely on what an ENT says -- they can see things that aren't there. I'm not saying you don't have sinus headaches or some other kind of headache or CH -- only to be careful about that diagnosis. Try to get to a headache center if you can (most neurologists are pretty useless). Your symptoms are not all classic CH symptoms -- your attacks are a little or a lot too long to fit the "standard" definition, though some people do get long attacks; it's rare for a sequence of attacks to go on for only a few days; people do vomit from the pain but it's not common. The pain around your eye is classic CH. I don't think the numbness is a typical CH symptom, either, and I just don't know bout the popping. Others might have something to say about that. Needless to say, these are some serious effects (including that heart rate drop), and I'm sure you'll look into them vigorously. Did you get anything at the ER that seemed to help?