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Showing content with the highest reputation on 01/26/2017 in all areas

  1. it's not a matter of believe. It's actually fact and well established in the medical literature. Ask him to look up cluster headache treatment in up-to-date. Up-to-date is a credible medical reference that many physicians use to keep apprised of the latest and most evidence based treatments. The use of oxygen to treat cluster headaches is a first-line treatment recommendation in pretty much every correctable source. Printing off the information and bringing it to him to discuss may also be influential. Be sure to approach him or her in and even handed manner and not as a know it all. Unfortunately many physicians will to new out and not be interested in helping if they perceive attitude. It's not right but that's the way it is. You are on solid ground requesting oxygen.
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  2. Only one thing to add here. Sleeping in can adversely affect your CH. It can be set off if you change your sleeping schedule. Many find that sticking to a regular sleep schedule helps a lot. This weather is hard on many, with the falling barometric pressure of a weather front moving in setting off a lot of heads!!! Not much we can do about that one. The amount of Verap. you can tolerate is at least partially determined by your normal blood pressure since it lowers your BP. Personally, I have found the D3 Regimen to be a huge help. Are you seeing a Neurologist or Family doctor? A good Neuro would be your best bet in the medical field. Especially one who is a Headache Specialist. Well.That turned out to be more than one addition!
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  3. Of course, step one with a doctor "who doesn't believe in" O2 is to try to educate him. You could print this out and show it to him -- http://jamanetwork.com/journals/jama/fullarticle/185035-- or you could tell him to look in any damn medical book. But real quick, I would jump to step 2, and fire any so-called "doctor" that "doesn't believe in" O2 for CH. There's a list here of recommended doctors, which might help: https://clusterbusters.org/cluster-resources/ And of course you can do what many do and set up your own O2 system using welding oxygen. It's completely crazy for you not to have it. It's a game changer (though it won't prevent a cycle). Yes, you might up your verap. You don't say how much you are taking. Some people have to get up in the 900 mgs in cycle for it to be fully effective. Similarly, you don't say how much melatonin at night. Some people get into the upper 20 mgs before it takes effect for them. When you say you're on the D3 regimen, are you following it completely? Have you been on it long enough for it to take effect? Have you done any "loading" to get your D level up faster?
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  4. Wilson, I am a new member take my knowledge and experience softly as I am far from being an expert, but I have been suffering for over 14 years. You sound like your in my boat house! My preventives are Verapamil 480mG Extended Release tablets and 1000mG Depicote. This keeps the shadows and the occasional random attack away most of the year, now I cycle out once to twice per year. When that occurs the only thing that will abort my attacks is Sumatriptan 6mG auto injector pen, which is a scubQ injection. From my experience, the pill form doesn't work as my attacks come on way to fast for the pill form. All the years I have been on Sumi tell me that it can not even in pill format be used for preventive measures. Oxygen does work for me only if I am awake and catch the attack in time, and I am currently in a cycle and getting about 5 attacks per day but most of them hit while I am sleeping which makes the O2 useless. I can tell you this if Sumi helps take away your attacks and you can bear it, a large bag of ice over the side of my head that gets the attack can help abort some attacks if I catch it in time. The extreme cold basically does the physical effect of a vaso constrictor just as Sumi does to your brain vessels. So the ice may help you. And a cheap bag of ice far exceeds the dollar and cents of using Sumi. I am going to try and start using O2 therapy with ice and my preventives and see if I cannot find a healthier and affordable means of aborting my attacks. I still haven't found a way out of a cycle yet, the only thing that works for that is time. Currently my cycle is 8-10 weeks. Hope it helps.
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  5. "...the further I get into the cycle the more exhausted..." Well known to us cluster heads isn't it? Sometimes a dark hole with no light at the end. The beast eating us in small bites and there seems to be no end or valuable solutions. Yes, I make the same experience others probably not believing in our devastating situation. But this is completely normal. For an outsider it is schier impossible/very difficult understanding our pain. They do not suffer from this repeating pain. The endless repeating attacks are what put us down hard. ​Always keep in mind, we are dynamic not static. So no, it won't be forever. Things will change by the law of nature for sure. I personally think the most important is not to live in circles. Always stand up and walk no mather how and in which direction. Standing up and walking is at least to me one important principle. (lost in the wilderness? Do not wait for help from outside. Stand up in any circumstances and walk.) Living in circles and staying where I'm am seems to me a very bad strategy.
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