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Paula Lima

Chronic Cluster Patient Pain Free for 11 days

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I have had cluster headaches for 30 years - chronic for the past 5 years.  I listened to a video on YouTube- Dr Deb discussion of a study done on chronic cluster headache patients on a ketogenic diet.  I started keto on April 15 - 11 days pain FREE - no medication- no oxygen- no cluster at ALL.  It’s less than 10 grams of carbs per day but completely doable!  I feel great, getting to sleep thru the night is miraculous!  Please listen and please try it! It has changed my life completely!  I know it’s only been a 11 days but I haven’t been pain free for 5 years !  Please reach out to me if you have any questions- I am in a heavy therapeutic level of ketosis- I test with a blood meter to ensure my level stays that high ( I don’t think it would work at a low level of ketosis) I don’t take any supplements to do this diet - no exogenous keytones at all - I do it all Natural!  Again please reach out if you questions and I will gladly help any one find relief from these monsters. 

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If it works, great, though from my own research into keto for purposes other than cluster, I keep coming across many things saying it is not something you can maintain, in a healthy way, for a lifetime, it is the definition of a diet, you do it for 1-2 months then go back. Seems doctors do not recommend it for long periods of time.

Also, we are all here for the same reasons and simply because someone mentions this is a redundant post as the info is posted in its place, under theory is not lame.

I find that kind of reaction, is.

 

Edited by devonrex

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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! 

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3 hours ago, LazyGrind said:

@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.

 

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

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I’m not here to defend my position as I never thought trying to help people would truly be such a challenge and  boards - this is ridiculous!  I posted a screenshot of the actual video - these days everyone can search YouTube- If you read the top line of the post it states specifically “not that this will help everyone but... there is hope!”  

It seems you are more concerned with being the thread police than what the message is stating.... trust me - after 30 years of  suffering I am very excited and sharing what I know works for me!  The study of ME!   It is not medical advice I am giving, I am not pushing any DRUGS, and am genuinely helping people..., I hope you find what helps you and don’t feel the need to always diminish people’s intent to help... oh yes I’m new - no I don’t feel the need to develop a  relationship before I tell people what I found.  I put the screen shot so everyone can find it on YouTube - I am here to help and share just like I have in all the other cluster groups I am in. - It’s not a popularity contest I could care less how many badges someone has - how long they’ve been in a group - we are all SUPPOSED to be cluster survivors supporting one another not seeing who can tear someone down.... if you had an issue with my multiple post - I was not aware the same people would always see both - so yes wanted to be sure I reached as many people as I could. You could’ve nicely commented instead of accusing me of “spamming”.  

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Sorry, if I came across harshly. I was only offering some other information on a keto diet, it is a form of ketoacidosis, being in a state of ketosis and not recommended in the long term, because of the effects it has on the body, for an episodic, who could use it to mitigate their period, would be ideal in my mind, but long term effects have issues up to and including heart damage from the studies I have read since replying. I was only adding caution, before someone jumped on this because we all want something to work for these fucking things.

As to the whole 'attack' angle. Someone got offended when they got called lame after calling another lame then saying the initial thing was said badly after responding badly, pretty sure there is enough blame to go around for bad manners. On my part, I apologize.

 

Also my user name is in reference to my cat, a Devon Rex, who is the only thing that has been able to calm me or even get a smile during high number attacks, simply because she is happiness you can cuddle and so damn empathic her skin crawls if my hand comes near her when I am mid attack, but she will still come to be near me. Because of this I can occasionally, 'set aside' the pain for her sake. Its...disassociation, something something, but it can give me an eye in the hurricane of the pain for a few moments.

Edited by devonrex

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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

 

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1 hour ago, devonrex said:

Sorry, if I came across harshly. I was only offering some other information on a keto diet, it is a form of ketoacidosis, being in a state of ketosis and not recommended in the long term, because of the effects it has on the body, for an episodic, who could use it to mitigate their period, would be ideal in my mind, but long term effects have issues up to and including heart damage from the studies I have read since replying. I was only adding caution, before someone jumped on this because we all want something to work for these fucking things.

As to the whole 'attack' angle. Someone got offended when they got called lame after calling another lame then saying the initial thing was said badly after responding badly, pretty sure there is enough blame to go around for bad manners. On my part, I apologize.

 

Also my user name is in reference to my cat, a Devon Rex, who is the only thing that has been able to calm me or even get a smile during high number attacks, simply because she is happiness you can cuddle and so damn empathic her skin crawls if my hand comes near her when I am mid attack, but she will still come to be near me. Because of this I can occasionally, 'set aside' the pain for her sake. Its...disassociation, something something, but it can give me an eye in the hurricane of the pain for a few moments.

I have a beagle that offers the same for me. In return i hold her while it thunders lol

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Well bust my britches devonrex, I thought you had a Devon Rex...  On topic... Eating healthy is a lifestyle, not a diet & we won't risk our health. That Hurts My Head, I 2nd your group hug & raise you one (edited to correct myself it is a group hug) I'll raise you 200. Absolutely no accusations here. Accepting suggestions on which topic in which board to reply to... The topic titles are so similar I get confused.

Edited by Brain on fire
Edited for group hug

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Hi All, sorry for the delayed response -  I am strict keto - less than 10 net grams a day.  No added sugar at all.  I eat meat and vegetables, butter, cheese and eggs. My meal plan is balanced with approximately 80/15/5 so basically the only carbs I get are from fresh vegetables, its moderate protein I believe the key for me is definitely staying at a high level of ketosis with a lot of fat.  ( this was a major change for me - I was very low fat and high carb) 

 I would be interested in any studies on long term studies as every thing I’m.reading points to this way of eating as very sustainable with no adverse side effects. I realize some think it’s a fad and some who do it - don’t do it in a healthy way. That could be the difference- there is healthy keto, vegan keto, and all different types of keto but how they eating to get there?  If its the fake keto chemical laden foods then I can agree - it’s not healthy 

I’m so happy to report I’m still pain FREE and feel amazing!  I haven’t had 15 pain free days without meds in at least 5 years! Sleeping 7-8 hours at night with no fear or dread of waking up with one and being exhausted all day. 

I’m not sure if or when I will try to add more carbs, I’m not willing to try it yet!  It’s been 15 days so still new to me . 

Also the only people who need to worry about keto acidosis is Type 1 diabetics.  

I will continue to update also wanted to clarify I don’t know about “cure” I’m using the word “manage” for now just because if you go back to eating like you normally did (according to the patients in the study) they come back.  Thank you all for your comments- I would definitely recommend it to anyone to try and see what happens!  It may work great for you too! Check with your dr tho.  Big group hug! 

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I would not say the only people are type 1, it can happen in type 2, but it is rarer. Anytime your insulin runs very low, which in some can be caused simply by biology. They do not produce a lot of natural insulin. 

 

As in everything, there are studies and who knows if they will be proved cause and effect, I mean eggs, good, bad, good, bad, good, maybe. as one example, but it does not take more than 3 minutes to find credible articles. https://www.acc.org/about-acc/press-releases/2019/03/06/10/29/low-carb-diet-tied-to-common-heart-rhythm-disorder  that is a study by the America College of Cardiology.  I am not saying "Omg no, bad" just for anyone who is desperate, like some of us are, to look not only at benefit but risk, I weigh every single treatment I do in terms of "If it works, great, is it sustainable? Will it fit my life? Do I have a family history of something that this could make worse?" etc etc. 

I suppose, I am cautious by nature and while I would love to see this as an effective long term answer for all, also feel people should know to look at the other side of the coin.

Even Batch strongly suggests/cautions to go over all of the Vitamin D regimen with a doctor.

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Consider the level of physical activity. In my former triathlon life I ate healthy. I have had rhabdomyolysis, not related to over exertion. The last thing anyone would want is to have their muscles break down to the point you require dialysis to save your kidneys. Just sayin... Not good, not bad... IMHO whether it be fashion or diet a fad is just that, a fad. To clarify I have not labeled what the OP is actually eating as a fad. :) I hope this thread will be updated.

Edited by Brain on fire

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It is very nice to hear that this method starts working for after only 11 days. I wouldn't get through with this diet so my deepest respect! Regarding the long-term effects one of the problems is that your body will loose the ability to process carbs. Not only because of this reason it is  advisable to consider keto as a diet only! But as long as you are painfree it serves the purpose.

The problem seems to be the point when returning to normal food. In the first paper of C. Di Lorenzo et al. [1] he wrote: One of patients that responded in the first month of diet decided to revert to SD and CH recurred after 7 weeks. It would be interesting to know if the were stopping the diet abruptly from one of the other day. Does a neurologist supervise you during the diet?

However, I myself would stay on this diet a couple of month as long as it keeps me painfree. After that I would VERY slowly increase the amount of carbs week by week. I am thinking of desensitization like it works for people suffering from allergy reactions. Maybe this would have a similar effect. If this worked, I would add slow carbs like oats to my meal plan step-by-step. As a already mentioned above, on a slow carb diet you can stay for a long period of time.

Please consider that these are only my thoughts and I am not an expert! I just want to share my ideas about this topic.

Have you considered to ask the authors of the papers for advise? It sounds like they are really interested to help. 

Please keep us updated! Best regards, M

[1] Cluster headache improvement during Ketogenic Diet, 2015

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