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ClusterBusters

Paula Lima

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  1. Like
    Paula Lima got a reaction from LazyGrind in Chronic Cluster Patient Pain Free for 11 days   
    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. Like
    Paula Lima reacted to Milelli in Chronic Cluster Patient Pain Free for 11 days   
    Hi Paula,
    thank you very much for sharing! I appreciate it! Good to hear that another one of us has found relief!
    Are you also restricted by 10 g carbohydrates/day like reported in the video?
    Just thinking of a long-term implementation,, maybe after a while on low-carb there is way to change to slow-carb and maintain the painless condition. Unlike the low-carb, one can stay on this diet for a very long period of time. Also, I found some hints that slow-carb can give benefits to CH sufferers. Some are guessing that it has something to do with hyperacidity. The slow-carb would improve the oxygen supply to cells and slow down the cell metabolism.
    Cheers, M
     
  3. Like
    Paula Lima reacted to MoxieGirl in Chronic Cluster Patient Pain Free for 11 days   
    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
  4. Like
    Paula Lima got a reaction from LazyGrind in Chronic Cluster Patient Pain Free for 11 days   
    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! 
  5. Like
    Paula Lima got a reaction from LazyGrind in Chronic Cluster Patient Pain Free for 11 days   
    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! 
  6. Thanks
    Paula Lima reacted to CHfather in Chronic Cluster Patient Pain Free for 11 days   
    Thank you.  Very kind of you to come here and share this.
  7. Thanks
    Paula Lima reacted to LazyGrind in Chronic Cluster Patient Pain Free for 11 days   
    @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.
     
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