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ClusterBusters

CHChris

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CHChris last won the day on January 23

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  1. CHChris

    Newly diagnosed CH

    @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. CHChris

    Prescription Frustrations - long rant

    @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. CHChris

    Prescription Frustrations - long rant

    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. 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.
  5. Already registered Eileen. Thanks for a great 2019 conference and I can't wait until we meet again in Chicago.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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
  11. 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).
  12. 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
  13. 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.
  14. 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.
  15. 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.
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