Jump to content

Leaderboard

Popular Content

Showing content with the highest reputation on 07/28/2023 in all areas

  1. Hey everybody, let's celebrate! Hoping i had been attentive enough during the 1st Annual UK/European Patient Conference, i remeber that exactly today is the day of the 25th anniversary of Flash's first post on a clusterheadache messageboard. A moment in time that somehow was the foundation of all help, sharing and resesearch in this awesome community. Thank you Flash, Bob, PinkShark Mark - and everybody who was and is involved and engaged. You couldn't have done any better!
    2 points
  2. Just sharing in case there is anyone else like me who is traveling to the Puerto Vallarta area of Mexico. I was in a town about an hour south of Puerto Vallarta and typically would have not thought about oxygen in the past, but given a recent 5 week, 3 - 4 times per day cycle I thought I better figure out a way to have oxygen while on vacation, in stead of battling the beast in my room by myself. I found OXYMAS (+52 322 174 9329) to be a great resource. Eduardo was the guy who helped me. Spoke perfect english and was actually somewhat familiar with CH. He delivered the oxygen to the place I was staying ahead of my arrival. It was not cheap, but the cost of a full blown attach is expensive also. I ordered (4) size E tanks which cost 3,000 pesos ($180 US) this was with delivery. They picked up on my last day and refunding be $500 pesos ($30 US) for each of the two tanks I did not use. I brought my own regulator and cluster mask in my carry on bag. Hope this helps someone
    2 points
  3. As a new member (but looooong time sufferer 23 years) I am so grateful for everyones responses. So amazing to feel seen and understood. I have been having better success with full CO2 exhalation, ending in a crunch, then long deep inhalation of O2. I have basically been shutting the tank off and on and finding a rhythm so that when I need that next hit the bag is full but I'm not wasting O2 into the room.
    2 points
  4. I got booted on the first page for not being diagnosed but self diagnosed and suffering from the same as anybody for 25 years is good enough! I did have a talk with a neuro that agreed with me and the funny thing is that nobody can give you a diagnosis without your words. Well, I have them.
    1 point
  5. It's good thing to try various techniques. What works for one doesn't work for all. I talk to people that have successful aborts in a short amount of time using methods that would just serve to piss me off while getting hit. It works for them and that's all that counts in my book. I would recommend a complete exhale in every breathing cycle as a starting point. Where someone goes from there will vary with the individual....and maybe from hit to hit.
    1 point
  6. The above answers and suggestions are wonderful! My only 'ad' is to hit the caffeine on your way to the O2. I keep strong coffee in the fridge for this or V8 Energy. I sit and rock when on O2. I start my breathing on my way to the tank. You can really help yourself conserve O2 this way: Exhale with force to ditch all the CO2 in your lungs and then do a deep inhale. Hold for 2-3 seconds and exhale with force, ending in a crunch. Likely you will get in 2 to 3 of these before you grab your mask. Continue with the deep inhale and forceful exhale for a bit. Then find the rhythm that works for 'that hit'. I find them to have their own variations that require different breathing techniques. The rocking rhythm will change too. I try NOT to worry that I am doing it differently than I did for the last hit! Just pay attention to which rhythm or speed is working for that hit. It may be different from the last 5 hits you had and that is fine. After the pain is gone, you really must do your 'post hit' breathing time. I have tried to eliminate that part and wind up doing a bat turn right back to the tank within 20 feet or less! Post matters. Do about 5-10 minutes with the regulator set for normal breathing. I count them to be sure that I do enough and don't have to 'clock watch'. I can set my regulator at 2-4 lpm for that part, so it is not burning a lot of O2 up on me. ATB!
    1 point
  7. I tend to keep my hand on the regulator as I am using my oxygen and adjust it up and down as needed. I try not to let the bag overfill to the point the oxygen is coming into the mask before I am ready for it. I change my breathing up almost hit to hit as needed. Sometimes long deep breathing works and others short faster breathing helps me better. It kind of depends on the situation and how fast I get to the 02 tank and get started. I will also chug down a 5hr drink to give the 02 a jump start, grab an ice pack and find a effective pressure point to apply that to it, Also changes per hit, and adjust my seating position. I am a sitter not a walker so stretching out my back or doing a crunch or both will change the effectiveness of my 02 sessions. By the end of the party I am breathing at a normal rate at maybe 4 or 5 lpm on the regulator.
    1 point
  8. I would say that a deep inhale/full exhale/inhale again every two seconds (26 times/minute, as you say) is not ideal. The reason for a high flow rate is if your regulator can't keep up with a preferable breathing strategy, but it feels here as though your regulator is dictating your strategy. While people develop strategies that are customized to what works for them, I would say (as it says above) that the most basic, or maybe "standard," approach is to start with a full exhale (with crunch), then a deep inhale, then hold for a couple of seconds, then a very full exhale, and repeat. This is going to take roughly ten seconds. If this technique works for you, you might be able to use a lower regulator setting for that pace and the bag will be full when you're ready. I think this video -- https://www.youtube.com/watch?v=PtFHRIQN17s&t=5s -- is quite good. You can start at around 7:30 in the video to see the breathing technique. I'm imagining that you have to "go lay down" after five minutes because you are practically hyperventilating, but taking a break while using oxygen doesn't seem like an effective strategy. Let us know how things go.
    1 point
  9. Hi @Frenchie, I'm copying some excerpted info from @CHfather's Basic Non-Busting Info, which I consider to be a particularly invaluable resource, below: Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks. Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below. People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts. Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills, and some people take taurine pills along with caffeine pills. They take those pills at the first hint of an attack, or a couple of hours before a predictable attack time. Many use energy beverages. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks.
    1 point
×
×
  • Create New...