Mle Posted July 18, 2016 Share Posted July 18, 2016 Hi, I'm about 2 months into a cycle. I've had these ugly head monsters for 15 years, started when I turned 30. I also have multiple sclerosis, diagnosed 4 years ago. I get cluster groups once or twice a year that last around 2 months give or take a couple of weeks. Oh, I'm also a woman. I think that's all the basics out of the way. I'm so amazed by this website!!! Congrats to every member for all the encouragement and advice. Last time I tried a website support group was around 10 years ago, not such a great experience so I didn't try again until today. I'm here to share what I know and ask about some stuff I've seen so here goes.... OXYGEN: This is my primary go to fo sho. Ten years ago someone mentioned oxygen on the support group but I couldn't get a doc to supply what I needed. So I suffered another 3 years until I met my husband. He brought home a emergency oxygen tank from the workshop (he's an engineer). Blew my mind that it worked!! That's when my initial battle with docs began. I could give a huge rant but please, if you suffer from headaches, fight your doc or get a new one!!!!!! Go between cycles if you can and get set up!!! Getting the oxygen wasn't bad after fighting threw two docs, but getting the equipment to go with it was an on going challenge. I was able to get a script for Apria to deliver o2. Apria is a pain in the ass but the drivers are actually good guys, in my experience and definitely know more than anyone you'll get on the phone. So first get some tanks and take whatever regulator and tubing they'll give you. Next, go on Amazon and buy the right regulator. You will need a high flow regulator that opens to 15ml and high flow tubing. Very important!!!!! Never attach oxygen to your face at a high flow. Hold it under your nose, so if by chance you fall asleep the oxygen will fall away from your face!!! This method is for short term use and is why your doc and Apria will fight you on getting the equipment but in my opinion, the only way oxygen is super effective. If your oxygen is covered by insurance, keep the script current! It's worth paying the copayment every month so when you need the o2 its there. Now, I have questions if anyone has some experience in the following I would so appreciate to hear from you. Shrooms?? How much vitamin d3? Does melotonin work and how much? Caffeine and how much? When I exercise vigorously it seems I can bring on a ch in about 30 minutes after, anybody else? Anyone have multiple sclerosis also? I' ll be so grateful for any responses and I'm happy to share in more detail any of my experience if anyone would like to know. Thank you all again. Quote Link to comment Share on other sites More sharing options...
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