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Everything posted by CHChris

  1. @CHfather is absolutely right, listen to everything he says. I can't stress enough how important oxygen is for the treatment of CH. I can't say for sure you have CH, I am not a doctor. But I think CHFather is right that you should treat it like you do have CH and would strongly recommend you try out oxygen. I suffered with CH for 7 years before I got O2, and things completely turned around for me once I did. Imitrex is a good starting point, but I can abort a headache with O2 with no side effects in about 10-15 minutes. Imitrex makes me feel tired and terrible and can make things worse if you take it every time you get a headache (every day). My understanding of how oxygen works is that it has vasoconstrictive properties that cause the blood vessels pressing on the trigeminal nerve to constrict (get smaller) and stop pressing on the nerve. I am not a doctor, however, and this may not actually be the case with oxygen. Not a lot about how it works is actually known. At any rate, some of your symptoms sound like what happens to me. The hard thing here is that nobody has the same symptoms and triggers. Like @jon019 said, we are all different, yet the same. 2pm is a normal headache time for me, I call them my "cluster times" (mine are 2pm, 6pm, 10pm, and 90 minutes after I go to sleep). I can practically set my watch to it. There are others that are triggered by any number or combination of things, and you are going to have to find out what yours are. Some of the medical literature says clusters don't have triggers, but that is not true. For example, alcohol is a trigger for a great number of us. To make matters more complicated for you, you describe other symptoms that are not necessarily unique to CH. Some of what you describe we know here as "shadows," and there is almost nothing in medical literature about them, but most of us have them. There is a feeling in your head before you get hit with the intense pain, and it acts as a warning about what is coming. When the pain comes it is searing or hot and located behind your right eye. That pain starts migrating into the orbital area and reaches down into your sinuses and your jaw on the same side. That is because the trigeminal nerve attaches to all of those places, and is the nerve that causes our cluster pain. (CH is one of a group of conditions known as Trigeminal Autonomic Cephalagia) Also included with the cluster attack is a profound tension in the neck. This created issues with my diagnosis of CH, because it is part of the mechanism in migraine as well. I have seen no medical literature on this, but anecdotally I have a few cluster buddies that talk of their "cluster knot" in their neck or shoulder while they are in cycle and complain of the almost painful tension in the neck and shoulder. I also have sensitivity to light, especially where there is a large contrast (ex: oncoming car headlights at night). As far as the sleeping it off goes, I can only do that with shadows after an attack. However, napping is a big time trigger for me, so I can't take a nap unless I want to get hit with a 10 later that day. When I did nap, I would wake up with that familiar feeling behind my eye. This is present for me any time I take a nap, even if I was feeling fine before I went to sleep. Also, you need to start keeping a headache diary. This is important because if it is CH, chances are that they will suddenly stop one day, only to return later down the road. There are 2 types of CH, episodic and chronic, and most people (75%?) are episodic. Keeping track of your headaches, descriptions of the pain, what you ate that day, weather conditions, stressful events, etc. can help you determine what is going on. That is good information to have even if you end up not having CH. I apologize for this being so long, I hope it is helpful. I hope you don't have clusters. But if you do, you are absolutely in the right place. There are a lot of people here who understand and are happy to help you. Your first step is probably to get some O2 to try. A question for the experts: If you can abort your headache with oxygen, doesn't that indicate that you do have CH and not one of the other TACs or migraine?
  2. @Rush I think the 125 cu ft tank is the perfect balance between size and portability. The tanks are fairly large, but I can carry them around without issue. I fill my E tanks off of them and also have them set up for home use. The rough conversion is that a 125 cu ft tank has almost 3500 L of O2 (close to the volume of 6 E tanks), and that can usually last me a couple weeks. If I have a really bad hit (or get hit at night), an E tank is not quite large enough to kill it. Having the extra capacity in the house and ready to go is of great comfort when you're getting hit a lot. Also, I had a good experience getting an O2 Rx while traveling to Orlando a few months ago. I had absolutely no trouble getting E tanks delivered to my hotel room, and only had to fax them the Rx. The company is called Orlando Medical Rentals. They appear to be setup for serving vacationers paying out-of-pocket, so it might not be cost effective for someone who lives in the area. But I thought I would pass along probably the only good experience I have had getting service from an oxygen supplier.
  3. Once I went to strictly welding O2 I thought I was set. But there are still problems sometimes. I usually have to prove ownership of the tank by carrying around the purchase receipts when I have them filled. I often have to exchange my tanks, which I hate but tolerate. I also still carry a print out of my O2 Rx with my portable tank, regulator and mask. But I NEVER mention medical oxygen or Rxs with the welding store. They get really weird about selling welding o2 when you do that. I have two 125 cu ft tanks (M tank) and I fill them with welding o2 for $20 each. I also own 2 E tanks that I fill with a transfill rig I bought off Amazon. These days my O2 bill is down to about $40-60 per month. However, there were some steep up front costs. Each 125 cu ft tank was about $250, and the E tanks were about $50 each. The transfill rig was about $80 off Amazon.
  4. 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.
  5. Already registered Eileen. Thanks for a great 2019 conference and I can't wait until we meet again in Chicago.
  6. 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.
  7. 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.
  8. 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.
  9. 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).
  10. 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. 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. 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. 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. 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. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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?
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