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Cluster Headache Help and Support >> Getting to Know Ya >> Hello, and thanks for all the great info. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1481453894 Message started by Jacobtwotwo on Dec 11th, 2016 at 5:58am |
Title: Hello, and thanks for all the great info. Post by Jacobtwotwo on Dec 11th, 2016 at 5:58am
Hi,
I'm a 42 year old living in BC Canada. This episode started ten days ago after a four year remission. First CH arrived in my mid teens and this was my longest break, so thought maybe I had outgrown them. Over the years I have tried pretty much every pharmaceutical. Each episode I start again with what seemed to end the cluster last time. This time I was hoping prednisone would be my hero again but at the end of the taper was getting attacks within 2 hours of sleep and every two hours through the night. 02 has been effective for the daytime attacks, but I was getting so tired that the headaches were too advanced by the time I awoke for the 02 to work. I read some of the articles on D3 and started with 10,000iu last night. I also tried changing my sleep pattern, staying awake through till 4 am to avoid sleeping during the hours the attacks have been the most fierce. It was the best night for me in over a week with only a couple mild attacks easily handled with 02. It doesn't seem likely that the change can be credited this quickly to D3, but I am cautiously optimistic. I intended to get a test run to check my base levels but got excited and didn't want the wait, I will early next week. I thought I'd try sneaking a couple questions into my intro. The first, is it likely or even possible for d3 to work that quickly? The second is about 02 masks, I have a non rebreather without a bag. I noticed many talk of using the bagged masks, is this a game changer? A second part to this question, when the 02 doesn't work.. The respiratory therapist said if it hasn't worked in ten minutes it won't, but I can't seem to give up on it, at least if I'm breathing 02 i'm doing something and don't feel quite as hopeless as if i'm just doing the shuffle. Is this at all useful? Do people believe 02 is helping on the more severe, hour plus attacks? A big thanks to all the people who have posted their stories and insights on here, has made a world of diffference to the feeling of isolation that comes with a new episode. Jacob |
Title: Re: Hello, and thanks for all the great info. Post by ericy on Dec 11th, 2016 at 9:25am
Hi Jacob,
First, sorry to hear that your remission period has ended. I am very new to this forum so I may not be the best to answer your question but I was just recently prescribed oxygen so I have been looking at a lot of the threads on this site related to oxygen use and the "oxygen info" tab in yellow on the menu bar on the left side of the page. From what I have read it sounds like 10 minutes is too soon to give up on the oxygen, it would require 15-20 minutes (or better yet stay on it 5 minutes after the pain has stopped). I also remember reading that some people would use the oxygen for several minutes and then take a break and then go back to the oxygen. It also sounds like the bag is important and many people have directed me to the mask that they sell on this site which you can get form the link "CH.com store" Eric |
Title: Re: Hello, and thanks for all the great info. Post by Jacobtwotwo on Dec 12th, 2016 at 9:28pm
Thanks,
Don and Eric I ordered the mask from this website and have been working through the oxygen info tab. The biggest factor for me seems to be how quickly I can get the oxygen to the headache, the longer I leave it the less likely it is to work. Gets a bit spendy on 02, have been through 6 E-tanks in 4 days, but have a M-tank on order. Batch, big thanks for all the work you have done on the D3 regimen. That is an extremely well thought out and presented body of work. I live midway up Vancouver Island in the Comox Valley, I'd imagine the climate and landscape is pretty similar to yours, though I haven't spent all that much time in Washington State. I have been close to headache free for the last couple days with only a few shadows easily washed away with 02. I don't know yet whether this means the end of the cluster. I will often have little respites or changes mid-cluster, particularly when I change my sleep pattern, but I am hopeful and loaded up on the rest of the supplement list. Jacob |
Title: Re: Hello, and thanks for all the great info. Post by Batch on Dec 13th, 2016 at 4:10pm
Hey Jacob,
Thanks for the feedback. The cofactors are an important part of the vitamin D3 regimen... Stick with it as this regimen gets more effective in preventing CH as serum concentrations of 25(OH)D build. I'm very familiar with that area of Vancouver Island. We used to fish Spring Chinooks in the Campbell River area in the 50's and early 60s. We usually stayed at April Point on Quadra Island and were there in April of '58 when they blew up Ripple Rock. Take care and please keep us posted. V/R, Batch |
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