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Everything posted by CHChris

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. CHChris

    Oxygen supplier

    I have recently switched from energy drinks to taurine powder in a cup of coffee. My CH are chronic, but things have picked up over the past two weeks or so (like clockwork). I hate energy drinks, so I got some 1000mg taurine pills online. I try to mix it in to a cup of hot coffee and then cool it down with an ice cube or two to get it down faster. It seems to work about the same as the energy drinks, and is easier on my stomach. 5 hour energy shots have the taurine and caffeine combo we are after. However, the Costco brand (Kirkland) energy shots do not contain taurine. Since things have picked up lately, I have had to use way more oxygen than normal. I even swapped my medical flow regulator for a pressure regulator. Basically it gives me the oxygen as fast as I can take it . The increased flow rate has been very helpful. You might try to increase the flow rate if you can for some of the crazy ones that won't go away. My welding regulator is the only thing keeping me sane right now.
  8. CHChris

    Newbie with 02, increase in attacks, any advice/help?

    I think you are having slapbacks due to not fully aborting the attack. I had the same experience when I started using oxygen. I would get hit at night, 10 to 15 min on O2, and back to bed. Repeat every 90 minutes all night. This is not my usual pattern, I get hit at night, but usually only once or twice a night. This went on for a few weeks, and I thought maybe O2 didn't work for me. I was even starting to think O2 was making things worse. I was experiencing slapbacks because I hadn't fully aborted the hit, even though I was pain free after a few minutes on O2. I bought the special Cluster mask, which was well worth the $25. I increased my flow rate from 15 to 25 LPM and increased the time to 15-20 minutes and then the 5-10 minute cool down (10-15lpm) at the end. I am not an expert by any means, but I would recommend increasing the flow rate. Sometimes I get worried about my oxygen supply and cut back the flow rate to conserve, and I regret it every time. I can abort with 15lpm, but I sometimes end up back on the O2. I have a gigantic H tank at home (the O2 delivery guy hates me) and an E tank for the car. I never play with the low flow rates anymore (always 25LPM) on the E tank because I am at work and have a fear of running out of O2. I might use more O2 the first time, but I only need one trip to the parking lot. I understand your desire to conserve oxygen. My insurance won't cover it, and it can get expensive. You might want to look into welding oxygen. It is the same quality as medical oxygen, but comes in a different tank and is usually cheaper. I have used welding oxygen in the past, and would not hesitate to use it again. Also, that big H tank of medical oxygen actually comes in a welding tank that is painted green. Another idea I could suggest would be supplementing the O2 with an energy drink containing caffeine and taurine. This has helped me abort daytime attacks. However, I haven't tried it at night. I have read from others on this board that they can drink an energy drink during a night hit and still go back to sleep. Above all, I would recommend not giving up on oxygen. Increase the flow rate and try to find an alternate (cheaper) supply. You have proven you can get pain relief from oxygen, now you just have to dial it in to prevent the slapbacks. You should get bigger tanks, too. Those E tanks are awesome for the car or travel, but the big boys are best for the house. My oxygen delivery company actually charges me the same price for the H tank as the E tank (which makes no sense to me, but works out in my favor). Congratulations on kicking out the triptans. I did that a few months ago and have felt much better. I can't prove it yet, but I think it has reduced the number of attacks I get. Also, congrats on kicking the topamax, the worst drug I have ever taken. I'm glad it didn't help me, because the side effects were insane. It would have been a hard choice if it actually helped.
  9. CHChris

    My experience with CH

    Busting is a topic I don't know enough about, as I am trying to learn that myself. However, I have a few tricks I have learned: OXYGEN is your best friend. There is no actual difference between welding oxygen and medical oxygen (only the cleanliness of the tank). Oxygen is your first and best line of defense. I have found that oxygen will abort an attack almost as fast as an imitrex injection without any of the side effects. You need, at a minimum, a flow rate of15LPM through a non-rebreather mask for 15min. When you go to your doctor, make sure s/he specifies the flow rate and non-rebreather mask (the one with the bag on it). Much more about oxygen can be found here: https://ashleyhattle.com/how-to-get-and-use-oxygen-for-clusterheadaches/ (This is a link to the website of a Clusterbusters board member who literally wrote the book on Cluster headaches) It wouldn't hurt to get the book either, I found it informative and encouraging. Also, there is a lot of information on this board about oxygen. Everyone does it a little differently, but most people have great success with it. A key point is that if it does not work for you at 15 LPM, increase the flow rate and try again. For me, 15LPM will work, but I do better with 25LPM. ENERGY DRINKS are helpful at holding off an attack and are also used in conjunction with oxygen to abort attacks. The combination of taurine and caffeine is apparently what does the trick. I used to slug a cup of coffee to hold off an attack, but the caffeine/taurine combo works better. Look into the D3 Regimen. A cluster headache sufferer put this anti-inflammatory regimen together and cured his headaches. Essentially, it is a bunch of vitamins in conjunction with large doses of vitamin D3. This forum has a lot of information about the D3 regimen, and Batch (the creator of the regimen) is a very regular contributor to this board and is always willing to personally help. Many people have a reduction in frequency and severity of their CH using the D3 regimen. I have those morning hits sometimes too. It sucks to wake up, go through hell, pop an injection, and then have to go about your day. Oxygen has made that bearable. Trex messes with me, makes me drowsy and worthless. Oxygen does none of this. I have also been able to drastically cut back the shadows with oxygen as well. I have recently stopped taking imitrex, and rely solely on O2 and Energy Drinks for aborts. (I still stockpile the injections for a rainy day, however). Also, there is some evidence that imitrex can make your cycles longer. When things were really bad I would take imitrex tablets as a preventative (I could prevent an attack for 12 hours with this method). It sounds like you may be experiencing something similar. Most importantly though, we have all been there. You don't have to put how you feel into words. Those feelings of despair are (in a way) a symptom of this condition. You are also suffering from PTSD (we all are). That helpless feeling you get when you got yet another attack is part of it and there are a lot of people on this board who know exactly what you are going through, and are willing to help. This simple fact did not keep a cycle at bay, or help abort any attack. But it gave me some hope that things would get better in the future. Congratulations on the baby, you have a whole new world to look forward to.
  10. CHChris

    Open letter to major chemical companies (BOL-148)

    I was at the Clusterbusters conference and heard the presentation about BOL-148. I reviewed my handwritten notes, so I don't have all the details. Essentially, a man named Carey Turnbull, a retired energy broker and psychedelic medicine advocate is funding the continued research of BOL-148. Again, I apologize for not having a lot of details on this, but apparently this man is spending a lot of his own money (millions) to continue the research. I am not on the FB group, so I don't know what was posted there. I had never heard of BOL-148 before this presentation. It sounds very promising though, and it seems this gentleman is determined to get this stuff into research trials. I'm sorry I can't be truly helpful, I was drinking from a firehose at that conference, and didn't absorb everything. But I heard the presentation, and I know a lot of people were very excited about the future of the BOL-148 research, including some people who have been around for a while.
  11. CHChris

    O2 prescription

    I just dealt with this issue. My neurologist would not prescribe oxygen. I went to my PCP with the information others have presented above. I would add, however, that some docs will push back because insurance doesn't always cover oxygen therapy for cluster headaches. Also, once you get the script, there are other hurdles, like the oxygen supply company. They will try to set you up with a nasal canula. Don't let them. You must have a non-rebreather mask. It would also be a good idea to have your doc prescribe the size of tanks you will need. You will need a larger tank (M size, or H size) for home, and a smaller tank (E size) for away from home. I thought I would toss that in because I have encountered these issues with my oxygen suppliers. Good luck to you. Oxygen has dramatically improved my quality of life.
  12. I did not take many pics. This was my first conference, it won't be my last. Besides getting to meet and hang out with lots of very nice people, I came home armed with a lot of information. Literally from the moment I arrived until the time I left I was busy gathering information, sharing stories, and fellowshipping with a great group of people. Everyone was helpful, and I came away months worth of information to process. I had never met another cluster headache sufferer before, so the conference was especially eye-opening for me. Racer1_NC taught me how to use oxygen, which I was able to put into practice the next day. I had never properly used oxygen before, and it makes a world of difference. Thank you very much for your help Before I went to the conference I had read that this condition had altered people's lives. I know it has changed mine. But getting to talk to people who understand what you are going through is absolutely priceless. Being able to relate to complete strangers in ways that I can't with my closest family members is an odd feeling, yet was completely exhilarating. I ate every meal as fast as I could, sometimes rudely talking with my mouth full. I stayed up way later than I normally would, talking and hanging out with people I had never met. The presentations were very informative, and I came home with a lot of "action items." For example: find a new neuro that will actually prescribe oxygen, because it is the best abortive treatment I have found. I have a lot of new things to try, and I am emboldened by the experiences others shared with me. As it turns out, I'm not so weird after all, and that is empowering. Also, I saw a lot of people drinking alcohol, which is a big trigger for me. As it turns out, it is for a lot of people, but they are beating the beast and can enjoy there lives. Next year, I want that to be me.
  13. Hello guys. I'm new here and I am going to the conference in Denver. I am also new to oxygen, and have only been using it for a few weeks, although I have had CH for 7 years. My question is about regulators. I have to use welding oxygen because my neuro won't prescribe me medical oxygen. Will I be able to use my regulator on the tanks available at the conference, or do they have different threads?