Geisha

Hi CH community I have been episodic since 2001, got my first CH when I was 21 in the shower haha (wasn't funny at the time). Went undiagnosed for 8 years and had some horrible times, on occasions thought I would not be strong enough survive. Thanks to this site and the amazing advice from the senior members here, things are so much better. Doing the Vit D regime which has been fantastic and O2 to abort in an attack. Currently is a cycle of CH. Before this, I went PF for around 2.5 years which was my longest period PF since these things started. The severity and duration of attacks these days are far less than the bad old days. I have dosed with Vit L (did not have MM) 5 days apart on three occasions now with my last dose being last Thursday night. After the slap backs, the pattern after the last two doses has been to go 2-3 nights PF then wake up with one mild CH during the night and abort with O2. My question is.. should I dose again tonight which will be 6 days as opposed to 5 after my last dose? Or should I wait for the weekend and let things settle a bit, or wait for another week or so and let the dust settle even further and see how I'm travelling then? Any advice much appreciated. Cheers!

Hi meme All the best in these times, hope you dose went well and you can get back on track and be pain free again. Big hug, Geish

All the best MG big hug and pain free wishes

Hi Bob Just registered, thank you for the opportunity to participate/assist in any studies/trials going forward to assist in the understanding and treatments of CH. Really appreciate your efforts in general. All the best. Geish

Hey Kat So sorry to hear what you are going through, I know it is hard to get your head around at the moment in this time of despair but the future is bright and thanks to this site and the cluster buster community there more options and support than ever to tame the terrible beast. Have you tried the busting method? I know this comes with its challenges sourcing the busting materials and takes bravery to go to this next step but this is the only thing that has effectively worked for me to break a cycle (been episodic for 20 years undiagnosed for 12 years). Glad to hear you are on the O2 to abort the attacks but to break this cycle you are I encourage you to look into the busting method outlined on this site. Let me know if you have any questions about it. Sending positive energy your way. Geish

Thanks so much for that Batch, really appreciate that. Will try your suggestions and keep you posted. Thanks!

Hi all, hope everyone is having a good Christmas period. I have been episodic since 2001, this site is great it has really saved me and I am thankful to the Cluster Buster community. Oxygen, busting, D3 regime and low carb diet have really helped me. Apologies in advance for asking this if it has been already been answered within the forum. I have not been in a cycle since March but have been getting shadows the last few weeks but with no attack so far. I have upped my D3 intake from 10,000 to 20,000 combining this with fish oil, K2, magnesium and a multi vitamin taking these once a day with food at night. Should I keep doing this if I am experiencing the shadows or should I take 10,000 of D3 with the fish oil, magnesium and multi vitamin twice daily? Or any other suggestions welcome Thanks

Hi del, hope you are doing ok at the moment. It sucks to be in a cycle like you describe, alot of the things you describe sounds very familiar to myself when I first came to this site. If you can get of the meds and start dosing asap you are going to take the best possible step forward in your life. Its good you live in London as you should be able to access what you need to keep the beast at bay. Good luck mate, and I'm glad you came across this site too.

Yeah definatley a fan of this site CH father, jeff & bejeeber were very helpfull to me. All the info on here re: 02, dosing ect is so usefull as well. Glad to hear your doing well domino, you too. Yes, agreed...dosing does keep the beast at bay I hope I can help/support anyone who is suffering. I know a good source of 02 here in Australia for those with CH here in Australia. To peace and pf days.

Hey all, Hope everyone is doing well and staying strong, happy and positive I have not been on here for quite some time. Have been PF for an extended period. I still get some shadows, but its ok and I have been dosing quite regularly. I also have a bottle of O2 in my room with me which is great peace of mind. The month of May (going into winter here in Australia) has definatley been my danger month..with the onset of a cycle occuring in this period for the previos two years, so I am trying to do all the right things at the moment. I am was looking at the upcoming conference in Vegas in September..was planning on going travelling around this time so may be a possibility for me this year. Everyone on this site is so cool and supportive, and to be honest this site possibly saved me at a time when I felt I had no one to turn to All the best guys, with luck I may see some of you soon.

Makes alot of sense what you are saying, this is a great way of thinking. Sorry to hear about the horrible events in Norway, my sister did an exchange in Norway for one year and I know that it's country and its people are beautiful, but I know they are a strong nation who stick together and I know that you will come out of this stronger.

Thanks for all those suggestiosn CHfather, definatley looks like there is some interesting reads there. I found some of the literature I was interested in including Hoffman's publication at - http://www.bookdepository.com I have found this to be a very good and cheap online book shop in the past. Cheers

Optimask arrived yesterday!..very quick considering the distance it travelled! Thanks for that CH father, definately hepls to have an understanding doctor for sure! Alleyoop, my flow rate on my regulator goes to a maximum of 15 lpm. My doctor asked me what flow rate I wanted and I said it had to be a minimum of 15 for CH so that is what they gave me. Cheers for the usefull tips Joe, much appreciated, this is very impotant information regarding the safety issues for 02 users. Thanks again for your support guys, this is an amazing site and this cycle I have learnt so much. A few years ago I was totally clueless about CH and I feel the more I learn and the more I share experiences with you guys the better things are going to be in the future

Hey Guys, Cheers for that, happy to say that after going to a different doctor I was prescribed medical O2. The doctor was great, he had previously had a patient who had experiences releif from O2 and he was a very nice guy. I have one large tank and one small with a regulator at my home now. Just waiting for my Optimask which I ordered(may take a while since in am in Australia). The compay provided me with tubes that you breeth through your nose which I guess would not be the correct thing for CH. Anyway, I am pretty happy that I have at least got the O2 an a smart and caring doctor now. Something I did not have a couple of weeks ago.

Hi all, I went to my doctor today and was he was unable to prescricbe me medical O2. He referred me to a Neurologist but unfortunatley I cannot get an appointment until 25 August, and there it is not certain whether I will get precribed it then either. After reading CH fathers page on O2 and the infomation on O2 on CH.com I am looking into gettting my O2 from a welding supplier. I would appreciate any feedback from those who use Welding O2. Do you pretend that you are using it for non-medical purposes when you are purchusing it? Thanks