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ClusterBusters

CHChris

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CHChris last won the day on January 27

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  1. CHChris

    My arsenal thus far

    Your energy drink does not matter as long as it contains a mixture of caffeine and taurine ( and maybe guarana). I prefer Monster Zero. There are some other ones that taste more like juice. Don't forget ice water. In a pinch, you can drink a glass of ice water through a straw, aiming the cold water at the roof of your mouth on the side you are having your attack. This induces a brain freeze, which feels better than a cluster, and reduces the pain a little bit for a few minutes. I know that trick sounds stupid, but I read it somewhere on this forum. I was out with some friends one night and got separated from my O2 tank. I might of drank 3 gallons of water that night, but I was able to fight the beast for a few hours while I wished my friend farewell. I think of that trick as the hand-to-hand combat of fighting the beast, armed with a pocket knife. I can get in some strikes, but I am just buying time until I can call in the air strikes.
  2. Already registered Eileen. Thanks for a great 2019 conference and I can't wait until we meet again in Chicago.
  3. CHChris

    2019 Conference how is/was it?

    No, my bathroom did not have that kind of lighting, but I wish it did, haha. Every room in the hotel had a very trippy eyeball painting with a star in the middle of it, though.
  4. Don't give up on welding O2 just yet Kat. Many of the welding supply shops in my area will also deliver tanks. They do charge a fee, but I crunched the numbers one time and it was still cheaper than paying for medical O2 out of pocket. You could call around to your local welding supply stores and see if they do deliver. That could be a good way to save the time of visiting the ones that don't deliver. Another thought would be to get a smaller tank and carry it around using a dolly. 125 cubic foot tanks can be fairly heavy, but with a dolly it is a breeze to move them. That would be roughly the size of a medical M tank.
  5. CHChris

    Here's a beer to avoid

    A LOT of people had MANY MANY beers at the conference. And tequila. And scotch. I still find it remarkable, as I can't even have a sip. I haven't had a drink in 5 years. But a few years ago I might have considered it. I appreciate Lagunitas honest product labeling though.
  6. CHChris

    No medication

    Aviator or aviation oxygen is usually sold at a gas supply store. In my experience, these are the larger gas supply stores that sell many types of gases. My local welding supply store does sell welding and medical oxygen, but not aviator. It is important to note here that ALL of those types of oxygen (medical, aviator, welding) are all usually coming out of the same large tank out back. The procedural requirements for filling these different types are the only real difference. Welding oxygen is easier to get because more places have it. My GP doctor told me that the welding oxygen would be just fine as long as the tank was clean and had not been used for welding/cutting (as in the tank had been attached to a rig that could have allowed back flow with other welding gas). I have been told that the purity of welding oxygen has to be as high as medical oxygen to work properly for its intended purpose. You should google gas supply stores in your local area and call to ask if they sell aviation oxygen (or check their website). I would not recommend trying to get it at an airport though, as they mark up the prices steeply. I have been getting aviation oxygen only because the guys at the gas store were getting to know me too well and have been questioning how a man who is very obviously not a welder is using so much welding oxygen. They think it has to do with the fact that it cost as much for one E tank of medical oxygen as it did for an M-sized tank of welding oxygen (they are right). They are concerned about their liability if I were to sue them for getting injured breathing their welding gas.
  7. CHChris

    2019 Conference how is/was it?

    Yes, registration is open for Chicago, and if you register before the 28th it will be the same price as this year. After that it is $25 more. Here is the link: http://events.r20.constantcontact.com/register/event?oeidk=a07egkpa2ek0382d233&llr=asfwt7iab
  8. CHChris

    No medication

    If you can afford it, you should definitely try to get oxygen. I recommend either welding oxygen or aviator oxygen. The benefit of aviator is that it is "breathing grade" and does not require a prescription. I only add this because I have gotten some flack from my welding supply store for the amount of O2 I use. They know I am not doing that much cutting and they question me. I made this worse by trying to fill my medical tanks as well (because I had a prescription but O2 is not covered by my insurance), and they will refuse to sell to me if they know I am breathing it. So I get aviator oxygen and they don't complain. It is the same price as welding O2 and probably a quarter the cost of medical oxygen if you pay out of pocket. Keep in mind that welding oxygen is just as good as "breathing grade" oxygen, and these companies only refuse the sale due to liability concerns. Clovis also makes a good point. Many doctors (mine included) will not prescribe oxygen when they know insurance won't cover it. Don't let them do that. Paying for it is your responsibility and never let a doctor shut down an avenue of treatment for this condition because insurance won't cover it. (Especially when it is the most effective treatment available.) Regarding the medications: I am chronic and all of the stuff I was prescribed for a long time had no helpful effects. In that regard I would say I had "no medication." I did, however, have imitrex tablets, which could still be considered "no medication" as they absolutely suck for clusters. The advice I was given from a fellow clusterhead regarding prednisone was that if it stops working you need a higher dose. For example, if it stopped working at 30mg, then you would go back up to 50mg and taper back down. Of course, prednisone is only a transitional therapy until some other medication can take effect. I have been warned by many clusterheads not to take a lot of prednisone because of the cumulative side effects. But for a while, until it stopped working, prednisone was a blessing. Now I know them as "the devil's tic-tacs." @81007 For me, oxygen works almost as fast as an imitrex injection, which is way faster than the pills. But waiting until a full blown attack to take a slow acting drug seems like prolonging the agony to me. If you get shadows before your full blown attack, my recommendation would be to take the pill at the onset and not wait, but injections are better. I only use imitrex as a last resort (aka when oxygen is not available).
  9. CHChris

    2019 Conference how is/was it?

    It was a great conference and I did not want it to end, even when the hotel staff kicked us off the back patio. I have already registered for the next conference in Chicago, so I am officially counting down the days until the next one. @Txfire I'm glad you enjoyed your first conference and came away with some information to fight the beast. The most important thing is understanding there is hope and that you are not alone. There are a lot of people who get it and are willing to help. I don't know if I met you this time, so hopefully we will meet next time in Chicago. @Into Light It was nice meeting you at the conference and putting a face behind the screen name. Good luck to you. Chris
  10. CHChris

    Cluster rules

    1.) [Borrowed from BostonHeadacheDoc]: If you have to think about whether your new treatment is working....its not working. 2.)If your treatment is not working, stop taking it.
  11. CHChris

    strange changes to my clusters

    Mark, Freud means that many people here are using psychedelic medicine to treat their cluster headaches. We call it "busting." There are many prescription drugs that interfere with the psychedelic drugs, and they must be avoided when treating with psychedelics. From what I have read, some people respond to lithium. The first line preventative is verapamil, and lithium is a second or third line treatment. Everyone is different, and lithium might work for you. It certainly is not out of left field, and it doesn't surprise me that your neuro wants to go to lithium if verapamil didn't work. However, I have never taken lithium and would leave discussion of that to people who know more about it. Whether you are busting or not, oxygen is your first line abortive. You indicated in your original post that it did not help much. There are some people who don't respond to oxygen, but the vast majority do. And it is a real life saver for a lot of people. There are CH sufferers out there that only use oxygen, no other abortives or preventives. Also, the best practices regarding oxygen have changed over the years. Most of those changes involve an increase in the flow rate. Oxygen should be used for 15 min. at onset of attack at a flow rate of AT LEAST 15LPM (25LPM is preferred) through a non-rebreather mask. If you have not had success with oxygen, and you have not used it with those flow rates or mask, you really should try it again. Many people who thought oxygen didn't work for them ended up finding out it did work, but they were given bad instructions by their doctors. This happened to me, and when I got it right, my whole life changed.
  12. CHChris

    Oxygen concentrators?

    I have good success knocking out shadows with O2. I have found that I can treat the shadows with a lower flow rate than a full-on attack. For me, that is 15LPM for shadows and 25-36 LPM for an attack. However, when things are really bad, I go through a LOT of oxygen. I have an H tank in the house, an E tank in the car, and an M tank (welding oxygen) in the garage as a reserve just in case the O2 delivery gets held up. It is not an understatement to say that oxygen has given me back my life. Things still get bad, but oxygen allowed me to be more functional from day to day. In my experience treating shadows with O2, I have had to be persistent, as the shadows can get relentless. I basically do the regular routine but at a lower flow rate. This means staying on the oxygen for a few minutes after the shadows go away. I will say, this isn't 100% effective. Sometimes the shadows are just too bad, or come back too quickly. Energy drinks (ones with caffeine and taurine) do help a lot also. It is best to combine the two treatments.
  13. CHChris

    Fog = Shadows?

    It very well could be the beast returning. I'm sorry to tell you this, because we all know what comes next. Fog sounds like an excellent way to describe my shadows when they first start. No pain at first, just a weird feeling in my head and difficulty concentrating. For me it will slowly get worse until it suddenly explodes. Shadows can be debilitating on their own. Its like the beast is softening you up for the knock-out punch. I am chronic and have this happen pretty frequently. I have had success with coffee and energy drinks for the baby shadows. I have also been able to knock them back with O2. Of course, the beast is persistent, but the oxygen and energy drinks work for shadows too, before the main event starts. Hopefully the beast is not returning, but it is always best to be prepared.
  14. CHChris

    Sumatriptan Help

    Nikki, Injectable sumatriptan is a lot better than pills, which take way too long to work. A lot of people say that sumatriptan can cause rebound headaches. My neurologist told me to be careful how much of it I took, and offered me steroids for periods when I was using too much sumatriptan. Steroids like prednisone can be effective and give you a small break from the pain, but they have a lot of side effects that can add up over time. Your best bet, however, is oxygen. First identified in the 1960's as an effective abortive, oxygen is still under prescribed and under utilized for treating clusters. Over the years, the evidence suggests that higher flow rates are better. There is a ton of oxygen information on this site, but the quick version for you preparing to talk to your doctors is : at least 15-25 LPM, high-flow, 100% oxygen from a tank (not a concentrator) through a non-rebreathing mask. The conventional wisdom I have picked up from this board is that oxygen is so effective that you owe it to yourself to try it again. It doesn't work as well at lower flow rates, and can cause rebound headaches if not enough oxygen is consumed. It is essential to have high enough flow rates (15-25 LPM or more if that doesn't work) to abort an attack, and also to stay on oxygen (sometimes at a lower flow rate) for 5-10 minutes after the pain subsides. Just as important is the type of mask. You NEED a non-rebreather mask (the one with a reservoir bag on it. A nasal canula will not cut it. Don't let them talk you into a canula. Because the flow rates required to abort cluster headaches are so high, an oxygen concentrator will not be effective. They make oxygen out of the air in whatever room they are in, but do not deliver pure oxygen at a high enough flow rate. You are going to need oxygen in a tank. I hope this information helps you. I had to fight with my doctors and my oxygen supplier to get things set up properly, so hopefully you can head all of that trouble off before it happens. I still sometimes need flow rates higher than my medical regulators allow. During especially bad periods, I replace the medical flow regulator with a pressure regulator for welding. This allows me to dial in any flow rate I want. During these periods, I need about 36LPM, and only my pressure regulator can deliver that flow rate. Good luck to you.
  15. CHChris

    Oxygen supplier

    Batch, I used to have so much respect for you, but as a graduate of Washington State University I have to say I'm not so sure anymore. Of course, I am only kidding, and as a former squid myself (submarines), will give some respect for your Navy service. Thank you for all of your CH work, I know you are helping lots of people, myself included.
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