butchch Posted March 8, 2017 Share Posted March 8, 2017 Hi All, I just want to say thank you all for all the information on your forum, I am be so appreciative of all your experiences. My brief history (30yrs of CH) and story is as follow. I live in the most isolated City in the World, Perth (Fremantle) Western Australia. So CH are fairly rare. I like most CH sufferers was diagnosed with Sinus issues, migrane, teeth/jaw problems etc etc. It was not until 7 yrs ago I ended up in emergency for the second time that year. After answering all the normal questions this young Irish Neurologist came and sat on the bed. I remember the day so clearly. He said "not feeling great? I can only imagine what you have been suffering all these years. " I was a bit confused by his comments. He then went on to say. " I have some good news for you the rest is not so great. You don't have Sinusitis or a brain tumour, you suffer from CH, unfortunately there are no cures, however there are few simple things you can do that will help" He then went onto explain about the various drugs available including Oxygen and Caffeine. After trying all the different drugs I ended up 5 yrs ago relying solely on Oxygen and Caffeine and weekly visits to my Chiro. I had coped as well as we all do. My cycle is 3 months/yr with an average of 4-6 CH per day on RHS only mostly around temple area. I have had the same cycle for the last 5 yrs. From memory 1 year off over the past 10yrs. Prior to that I cant remember. The trigger for me is extreme heat over 40 degrees Celcius. It gets bloody hot in Perth. This year has been one of my worst. Not so much the level of pain or the frequency (some days 10 CH) Just being so tired, not able to socialise or work as much as I would like. I know my cycle will come to an end shortly (in 3 weeks, I hope). I was just over it. I have been a follower of Cluster Busters for years but never bother to join or get involved, just wanted to control it all by myself. I signed up a few weeks and started to read all the sad stories of CH sufferers. It gave me a big kick, something I have not tried might help. Vitamin D3, I'll give that a go first then MM. I started 7 days ago with Vitamin D. Following it to the letter. I'm on the big hit 2 week schedule. Very pleased to say I have not had CH for 2 days. Coo Wee. Unbelievable. Still waiting on blood results etc from my Dr so no information on my levels etc. I just have a query. I have had a headache (more of a muscle ache) going across the top of my head starting 30 cm above ears. It gets more intense as the day goes on and disappears by early evening. Very Stuffy nose on both sides. Are these symptoms or similar normal with the D3 regimen. I tried normal pain killers, not sure if they worked. Double shots of coffee seems to help. Oxygen does not work. I have had no shadows at all on my temple area for the past 2 days. Any comments on the D3 regimen would be appreciated. 1 Quote Link to comment Share on other sites More sharing options...
registrateyourjourney Posted March 8, 2017 Share Posted March 8, 2017 No comments but nice to hear you are doing better now. Perfect, Just keep up the good spirit. Quote Link to comment Share on other sites More sharing options...
butchch Posted March 9, 2017 Author Share Posted March 9, 2017 Thanks for the support. Just a quick update. I knew I should have said nothing about having 2 days CH free. Had a shocking night. The attack would not stop (8Hrs). Nothing worked for me which is totally abnormal. I have no shadows at all now, just the ache on top of my head (very very mild). I messed up the dates with time I have been on D3. I started 11 days ago so it was 9 days after I started that I had the 2 CH days off and when the headache on top of head started. I just wanted to know if the D3 method has any known short term side effects? Thanks again. Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted March 9, 2017 Share Posted March 9, 2017 yes but positive ones! The one probably a lot of D3 users can confirm within the first few days being on D3 regime is a positive change in sleep pattern. I personally consider the change in your ch/headache as a positive signal. Please verify your O2 setup. Do you really get the amount of O2 discussed in here? D3 or MM? My recommendation is doing both at the same time. Quote Link to comment Share on other sites More sharing options...
butchch Posted March 9, 2017 Author Share Posted March 9, 2017 My regulator is set at highest level 15. Never bothered to go get one to go higher as never needed. I must admit I was not running long enough last night as getting low on supply. Did not want to totally run out. Probably why I could not clear attacks (my mistake). All my tank refills delivered just then. Being at the end of my 3 month cycle I'm hoping its the normal routine for me to get heavy hits at end (normally just a few days) then completely CH free for 9 months. All good now just a headache which has moved from top to the back of my head. No shadows. As you said a change is all good from previous experiences. I have put the word out for MM but not having much joy . Pretty hard to find here. I was not going to try this cluster period as want to see how D3 goes first. Quote Link to comment Share on other sites More sharing options...
butchch Posted March 17, 2017 Author Share Posted March 17, 2017 Hi again, Just wanted to pass on my sincerest thanks to Batch. His D3 regime and oxygen tips have at last given me a normal life. I'm in to the 4th week of D3 with incredible results. The CH attacks have finished. They stopped about 4 days ago. Incredible! I was wondering if anyone had some ideas how I could promote the D3 regime in my country/area? It needs to get out there so we CH sufferers can be free of pain. I have made an appointment with my Neuro (Head of Dept at our State Hospital) who is very open minded to go over D3 regime, my results and your site. Any other suggestions would be appreciated. Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 17, 2017 Share Posted March 17, 2017 Why don't you contact Batch directly? He's a great guy, always interested in getting the D3 regimen into the awareness of people with CH and physicians. Up at the top of the page, you'll see the icon of an envelope. Click on that, enter Batch in the To line, and you're rolling. He will answer you, I can pretty much promise it. If he doesn't, let me know and I'll give you some other information. Quote Link to comment Share on other sites More sharing options...
butchch Posted March 17, 2017 Author Share Posted March 17, 2017 Thanks CHfather, will do. Your a legend as well. I still cant believe how great I feel after 30 years of s... I'm determined to help others who suffer from CH in my part of the world. 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 17, 2017 Share Posted March 17, 2017 Batch will be thrilled to hear from you! He loves success stories. Quote Link to comment Share on other sites More sharing options...
spiny Posted March 17, 2017 Share Posted March 17, 2017 Batch posted a cool link on the 'At what point are you wasting O2' I think it is called. And info on sharing with your doctor. Quote Link to comment Share on other sites More sharing options...
butchch Posted March 17, 2017 Author Share Posted March 17, 2017 Thanks spiny, Batch has been in contact with me already. Passing on all the info I need to get the word out on D3 etc Thanks again mate Cheers 1 Quote Link to comment Share on other sites More sharing options...
butchch Posted March 22, 2017 Author Share Posted March 22, 2017 Thanks spiny, Batch has been in contact with me already. Passing on all the info I need to get the word out on D3 etc Thanks again mate Cheers Quote Link to comment Share on other sites More sharing options...
butchch Posted March 22, 2017 Author Share Posted March 22, 2017 Just a quick follow up. I'm still CH free and getting the word out to as many CH and migraine people as possible with regard to the benefits of Batch's Vitamin D3 regime. I have been in contact with as many Medical people I know, all have responded with a positive view and are prepared to pass the information on to their patients and associates. Once again thank you all so so so much for your brilliant site and the wealth of information you freely give. You are all Legends. Life is great 2 Quote Link to comment Share on other sites More sharing options...
urs Brasil Posted March 22, 2017 Share Posted March 22, 2017 kkk, it is so nice, pure joy seeing somebody like you butchch, and yes, life is great. enjoy again! Quote Link to comment Share on other sites More sharing options...
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