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Showing content with the highest reputation on 05/06/2019 in all areas

  1. I'm not complaining about the post or the information it contains. I'm a strong supporter of trying anything and everything. But having multiple threads on the same topic is confusing for people and makes it difficult to get a clear message across, and actually makes it feel more like spam and a scam. If it's genuine, then one post is more than sufficient. I'm offended that you call me lame. I'm not lame, I'm just trying to get good, accurate information out there, and support others doing the same, to the people that need it. Multiple threads confuses the matter. Plus, posting the same post twice isn't 'more people reaching out', it's the same person spamming the forum. And if you were to look at the other post, you would see that I updated it with both a link to Dr Deborah Carver-Hodges YouTube video (which the OP doesn't do) as well as a link to the original study (again, not in the OP). I also sent Dr Carver-Hodges a long email (after tracking down her Credentials and confirming that she is a real doctor, which she is) this morning requesting more information about the Keto/MAD plan, and if she has any recommendations that I can share with the forum for those that want to try it. But you're not going to see that because there are 2 threads about the same topic, and people will get confused and won't be bothered to follow them both. Having been an active member of this forum for over 7 years, I have seen solutions for CH on just about every possible topic. When someone brand new comes onto the forum and in their very first post starts spouting-off they have found a solution, and it is worded in a way as the OP, with a reference to a video but not a real link or a link to the original data, my first response is a very suspicious one. This is why I spent OVER AN HOUR this morning researching this. This is why I found the video and emailed Dr Deb, and why I tracked down the original study. After doing that, I thought, 'there might be something here people will want to know about', and I posted my findings. But then the OP posted it again, turning it into spam, and again, my suspicions are standing on end. And being called lame has rather got my hackles up. I suggest we let people do their own research, and chime in with their own experiences, and perhaps a kind Mod will merge the threads (if they can do that) so that people aren't confused. If not, I will kindly repost my findings from this morning here, and they can delete the other thread. Might I suggest in the future, if you are new to the forum, make a nice introduction and get to know people a little bit, then explain about the wonderful solution that is working for you, and if others would like to try it, where they can go for more information. Lastly, I shall repeat my golden rule on clusters: No two clusterheads are the same, and just as soon as you figure your's out, it changes. Mox
    3 points
  2. As a sufferer for over 30 years... I’ve tried so many treatments that didn’t work... you have to keep trying until you find something that helps you - if not reduces them. As far as Dr’s saying it’s not healthy - me being over medicated from Pain is not healthy - my lack of sleep - is not healthy- different drs trying to give me blood pressure medicine when I don’t have high blood pressure - is not healthy. Keto has been used for years to treat epilepsy and so much research is out there supporting it - if you don’t want help and don’t want to try it - there is absolutely no reason to discourage others. I found out something that works for me - and the medical study showed it helped 86% of the patients. It is strict - less than 10% carbs but once you learn it you can very easily do it! People say Keto is hard - I say having clusters every single night is HARD— not having a life because of clusters is HARD - not being able to enjoy the sun because heat is a trigger is HARD - choose your hard! I don’t care if it’s been mentioned a million times .... it wasn’t mentioned by me! I am not spamming and I will not stop sharing my story and what is helping me. If can help just one person it’s so worth it!
    2 points
  3. I'm a butcher but I'm not a militant. Militants imply their belief is the only truth. I believe everyone should walk their own path. Peace...and I truly am a butcher.
    2 points
  4. Apology accepted. Sorry if I came off strongly. Mox
    1 point
  5. I did i have my o2 at 7 liters a minute for 10-15 works perfectly and i started batchs d3 regimen and i have only had one attack but thats due to missing a dose while i waited for the d3 from amazon so now attack free for 4 days and i cant thank everyone enough for the support ! But on his regimen im positive that if i keep my ng at 80 i will not get them everyday and that is a godsend!
    1 point
  6. @Moxie The more people reaching out and saying it is actually working means the more sufferers that may give it a go. Don't be lame.
    1 point
  7. Thank you. Very kind of you to come here and share this.
    1 point
  8. Just checked amazon and the 540 regulator doesn’t come up. Sorry
    1 point
  9. Sorry I didn’t see this thread it may be a little late but amazon has returns if you like this option better. I have recently bought two regulators from this CO WTFarley one 540 25lpm and a regulator for Etanks that goes to 25LPM. The first I bought direct. The second one I searched the product code in prime and it came up. Price was a dollar different but I had amazon points to use so all I payed for was shipping. I went with this company bc if the quality of their products. I could have bought a 25$ Etank regulator but even the product description sounded cheaply made. I haven’t included the amazon links but I think you got that covered it’s late and I’m mid hit. A lot of my posts are mid hit and I try to chime in here when I’m down for the count so to speak. Given that 9-18hr of my day are during a hit. The rest of the time I try to sleep and do something that make me feel good or study. Hope this helps. Brian if you can’t find them using product codes from the Farley site on amazon let me know. I didn’t search the 540 reg there but I’m assuming it’s available. The E tank one was.
    1 point
  10. Milelli, Yes, keep us posted on your progress. There seems to be a lot of pieces in this puzzle. Keep posting anything you turn up. The music I listen to is very relaxing and seems to be producing miracles. It's pretty much like meditation, just trying to clear my mind and chill. Things have really improved since I started to do it 24/7.
    1 point
  11. Nice post, Milelli. Thanks. I'm not saying it will or won't work; I'm saying your post is thoughtful and reasonable, and appreciated.
    1 point
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