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  1. learn why, how, and when this is happening to you. This is a progressive disease, the signal is always flowing as the brain grows, eventually becoming a loop causing distubances in the brain. http://www.theclusterbusted.com It explains every aspect of Clusters thru simple rules of electricity, chemistry and physics. Very eye opening and will give you a basis for moving forward in light instead of wondering "why me?" good luck
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  2. So I've been headache free since I started this drug five months ago. If you can try it, I say go for it. Best of luck. Lenny
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  3. Yes, that is basically true. Some other "headache" conditions sometimes respond to O2, but not consistently and generally not as fully as CH does. A big note of thanks can be given to Dr. Kudrow (grandfather of the actress Lisa Kudrow, and who himself had CH), who conducted the first recognized trials of oxygen in the early 1980s, and to Dr. Goadsby and his colleagues who conducted medically persuasive (double-blind, placebo-controlled, etc.) trials in 2009.
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  4. You don't need to agree or believe in what I share for it to be of value. I discovered over time, including trial and error how important a healthy diet and vitamin supplementation can help control headaches. Simply put we need to be eating the right foods and taking supplements to help maintain a healthy lifestyle as we age. Batch is on point with the (D3) which has been quite helpful in my life as I struggled with my headaches. We all have our own triggers we avoid. Alcohol, smoking, chocolate, MSG, nitrates, and the list goes on. Our diet and life style can trigger a headache. High BP, diabetes, sinus issues, the weather, exercise can all trigger headaches. No doubt there are other variables relative to each individual but my point is we all received the gift that keeps giving wether we want it or not. There's a reason we became CH sufferers. No one in the medical field can tell you definitively what causes these headaches or why we get them. What I found was that certain foods I was eating were triggering my headaches. There is a strong link between our belly and brain. Anything we ingest that crosses the blood-brain barrier can cause a positive or negative response. I can't eat pineapple, nuts, peanut butter or certain cheeses without getting a headache. But I can eat a wide variety of foods that don't cause pain. I learned this from being completely off preventatives, and testing. Everything I've learned hasn't been the magic bullet, but the quality of my life has improved as I experience less pain when a headache occurs. I still have headaches, but their not like they were before regarding frequency and duration of pain. What I learned is Tyramine is a naturally occurring amino acid which forms from the break down of food as it ages. Tyramine is not added to food, it builds up over time. Left overs in the fridge that we eat days later can contain high levels of Tyramine. Tyramine plays a role of helping to keep our BP on track, but it can also affect our bodies in negative ways. Tyramine can trigger a cluster headache. I've personally experience this based on foods I've eaten. Keep in mind what I eat affects me differently than how it may affect you. I'm not going to list safe or unsafe foods you should or shouldn't eat. I just want to make you aware of its potential in triggering headaches. When I eat something with Tyramine the headache is pretty bad. It all happens with the shadow, stabbing eye pain, stuffy nostril, and watery eye. I abort this event with some coffee and tons of water to flush out. Then several hours later another episode occurs which is not as painful. Then another which is a headache I can stand still and deal with. My point is over time the pain reduces as my body processes what I ate. That food item I had an issue with ends up on my shit list. It's a trial and error process that I refined based on foods I eat. The most important part I learned is to eat well and don't skip meals. Low blood sugar levels can trigger a headache. I know from my personal situation I didn't eat well because of my issue in dealing with headaches and pain on a regular basis. See if this rings a bell... You eat something, watch TV, and then head to bed. While you fall asleep you're woken up with some pressure and the headache kicks in. You scramble to your personal abortive routine and abort the pain. You fall back asleep only to repeat the process several more times. This scenario is what caused me to think about what I was eating before I went to bed. With me it was cookies, M&M's, sourdough pretzels, pizza, soda, man the list goes on. I was eating myself to headaches. I sleep like a baby now, and I don't wake up with headaches like I use to. Good sleep is an important element when it comes to proper headache management. While on preventatives I was taking an anti depressant (MAOI) which made the headache more painful for me. Outside of the CH features I would perspire from my neck. This was a dangerous situation I had no clue about that could have caused me a heart attack. My BP shot up and I felt light headed and unstable. What I learned and found out may or may not be your issue but I need to pay it forward in hopes of my experiences resonating to something you might benefit from. Here's to a PF life. PS. Two good books... The Gut and the Brain Change your Diet, Change your Life
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