Nicolás wrote on Nov 20^th, 2018 at 10:30pm:



Hi Nicolás

That’s great to hear and another #lchf (or should I say #keto) diet success against the beast! Really happy for you. I still feel bullet proof and 20 years younger. No verapamil, no oxygen and no Imigran, its like 24/25 years of headaches never happened!

If you continue to lose weight and become lean, you may find out that your LDL cholesterol (which isn't actually cholesterol) starts to go up. Don't worry if it does. Very lean people (especially those who exercise a lot) will often start to produce more vLDL (which becomes LDL) due to the fact that they are burn more body fat for energy. The vLDL/LDL is the transport mechanism for your fat tissue to be taken to your cells for energy. The increased LDL is not dumping cholesterol on your artery walls! Given that you mentioned blood values, I thought you may like to know that.


Take good care of yourself and ‘watch out for those carbs’! 

Regards

RightSider

Hi Joyisnow77

Before I get onto your post, I’d just like to say (with a big smile on my face) that today is now exactly fourth months medication and abortive free (I was on meds for around 22/23 years up until November). No attacks or shadows at all during this time and without checking my notes, I’d say I’ve been headache free since August (I weaned myself of the meds VERY SLOWLY). Still feel fantastic on the diet and I now live a perfectly normal life, with none of the restrictions I put in place to minimise and deal with my attacks. It’s like 25 years of clusters never happened!

Thanks for your kind words and other comments. It’s interesting what you say about smokers and glutathione. However, I strongly believe the link between smoking and clusters is only an ‘association’. Smoking relieves stress and people with clusters get very stressed! The daily stress and physiological changes in the brain caused by daily attacks, means that clusterheadache sufferers get an extra ‘kick’ from nicotine and find it very hard, if almost impossible to withdraw from it. I could be wrong, but that’s my simplified but honest opinion! Now, as for the NAC, I just buy the cheapest brand with decent reviews on Amazon whenever I’m running out. However, In the interests of complete transparency I must update you.  For the past month I have stopped taking the NAC, broccoli sprouts, D3, magnesium and all other supplements to see what would happen. Well, nothing did happen. I’ve remained headache free. That said, I’ll be going back on them next week for their general health benefits.

In addition to my research on glutathione, I have also been looking at something called NAD+. It’s a massively important chemical/molecule involved with energy metabolism and you produce more when in ketosis. I’m not going to go into detail now, because I’m still looking into it and it would need an even longer post! However, what I can say is that it could be a smoking gun. Basically, a very simplified version of my thoughts/research/opinion is as follows . . . . .

Ketogenic diet = upregulation of NAD+
More NAD+ = less neurogenic inflammation in the brain
Less neurogenic inflammation = less chance of trigeminal nerve activation
End result = far less chance of an attack

I would still throw glutathione into the mix as well because . . . .

More glutathione = less neurogenic inflammation, so etc, etc

It is worth stressing at this point that I do not think that a keto/lchf diet is a cure for cluster headaches. I don’t think a high carb causes them either. We can never be cured of this condition because it’s in our DNA. I am still a chronic cluster headache sufferer. However, by going ketogenic, my energy metabolism has changed. In simplified terms, this change in metabolism means that I am far less likely to trigger, or assist, the chain of events that leads to my trigeminal nerve being activated in a way that leads to an attack. Or, putting it another way - my brain chemistry is still super sensitive to the same things, but being in ketosis means the resulting chain of events doesn’t quite reach the attack/pain stage! My trigeminal nerve stays super chilled.

The interesting thing you may wish to look at the moment is exogenous ketones. Basically, you can raise the levels of ketones in your blood without the LCHF diet or fasting (even though it’s healthy, I recommend CH folk do not fast!!!). You do this by consuming them. To cut a long story short, there is currently a clinical trial taking place using ‘ketone esters’ in chronic migraine patients. The theory goes that raised levels of ketones may be all that is needed to stop migraines, rather than actually being in a ketogenic state. Ketone esters are like rocket fuel to ketone levels, but they cost an absolute fortune. However, you can buy something called BHB. This is the ketone that your body makes from the fat you eat. You can buy it as a kind of keto energy drink or keto meal replacement, though it is not as powerful as ketone esters. I’ve often wondered if it may be worth trying for cluster headaches. To be honest, BHB is still quite expensive and I have no idea if simply forcing ketone levels up in the blood would work in the same way as being in a ketogenic state. Given that I enjoy the LCHF diet and the amazing impact it’s had on my health (in general), I’ve not felt it necessary to look for a substitution. So, I’ve not looked into the science behind the idea.

Anyhow, back to your situation. If you want to go into full battle against the beast armed to the teeth then I would go with what you have said. Full keto diet, D3 regime, NAC (600mg p/day), broccoli sprouts and I’m assuming you will be taking magnesium as part of the D3. Do not fast or even skip breakfast. Intermittent fasting (skipping breakfast consistently) caused high intensity and very frequent nocturnal attacks for me. Are all those steps necessary? Perhaps not. I believe that some sufferers may simply benefit from only going low carb (or even just zero sugar), some may need full keto, some may need full keto and the D3 regime (or just the D3 regime).  However, for some, it may need all of those steps.

My current (simplified) line of thinking is that us clusterheads have a basic genetic flaw. This flaw means we are susceptible to a form of neurogenic inflammation that leads to our trigeminal nerve activating in a very shitty way. For some people, simply restoring vitamin D3 levels may be enough to prevent the activation trigger point. For others it may need prolonged ketosis, and for others both. There will be other things that can affect this trigger point. Lack of magnesium, light levels, environmental toxins, sunlight exposure, sleep quality, the list goes on and on and on. However, I firmly believe that diet (not excluding background insulin resistance) has the biggest underlying impact on neurogenic inflammation BY FAR. The science supports this, and it makes complete sense to be fair. You really are what you eat!

I’ve waffled on enough! I hope you found some of that helpful and good look with the upcoming battle!

Regards

Rightsider

Absolutely wonderful news. The keto diet is great for headaches of all kinds, plus it can help shed extra weight too.

Hi Brian, CHDAN & everyone else!

First of all, CHDAN, that's truly fantastic to hear, but to be fair it doesn't surprise me. I am seriously happy for you and can understand how you feel. However, remember that the keto diet is no cure. It just MASSIVELY reduces the chance of having an attack. I've been attack free since around August and off all preventative meds since November. But I get the odd super mild sensation (not even a shadow) every now and then, just to remind me that I'm still a 'clusterhead'! Though to be fair, that only happens when I have alcohol on an empty stomach and after dehydrating myself through exercise. I like to 'test' myself every now and then! 


Given that the diet has put me into complete remission, got me off ALL medications and made me feel 20 years younger, I’ve spent many hundreds of hours researching it to see whether I may be doing any harm, or indeed killing myself slowly. I have a background in Science (graduated with a BSc), can get my head around most published studies (though certainly no expert!) and understand the importance of ‘objectivity’ very well. Therefore, I have genuinely looked at all sides of the arguments, read as many of the critical studies as I can find, been as objective as possible and looked at the opinions both supporting and discrediting the studies. 

Now, I must stress that the following statements are based on what I have found out over the past 10/11 months and are MY OPINION only. I could waffle on for page after page giving evidence for my conclusions, but I won’t! I’ve tried to be brief and to the point.


1 Nutritional science research, and the conclusions drawn from it, are based on the weakest forms of scientific evidence. It would not be considered even remotely reliable in almost all other areas of science. You could almost give it a ‘junk status’ rating.

2 The conclusions drawn from this ‘unreliable evidence’ are usually MASSIVELY BIASED. The whole area of nutritional/dietary science has been totally and utterly corrupted/ruined by underlying biased beliefs, agendas, industry influence/pressure and the sources of funding for many of the studies (big food, pharma, religious groups etc, etc). You can discard around 95% of anything you read about diet /nutrition on Google and in newspapers.

3 I cannot stress point 2 enough!

4 All of the studies I’ve come across that criticise keto/lchf diets are complete and utter garbage when you read past the headlines. Seriously, they are a monumental joke and I can’t stress that enough. Most of them are also based on diets that aren’t even low carb and nowhere near ketogenic! They data has been manipulated to present a bad case for low carb and the conclusions given almost laughable. See points 1 and 2.

5 There are no RCT’s (proper evidence!) that have ever shown that a ketogenic diet is bad for your health.

6 There is no proof whatsoever that saturated fat is bad for you. In fact, when clinical trials (not unreliable epidemiological studies which make up the VAST MAJORITY of dietary/nutritional research) have been done, they have shown that saturated fat is benign at worst and protective at best.

7 The food and pharmaceutical industry is terrified of LCHF/keto diets. If everyone started to go low carb, they would lose billions and billions of revenue. They will stop at nothing to try and persuade the general public that they are dangerous. Always keep that in the back of your mind when reading the latest article!

8 We evolved from apes on a ketogenic diet. We are here today because of ketosis and high fat diets. Some ‘experts’ (with a slightly more objective opinion) say that more research is needed to see if ketogenic diets are safe. What? Isn’t millions of years of evolution good enough for you? There has NEVER been any long term study on the safety of HCLF diets, yet we’ve been repeatedly told to eat one. Oh, and lets not forget the introduction of dietary guidelines in the 1980’s (which told us all to eat a HCLF diet) has coincided perfectly with a worldwide explosion of obesity and chronic disease. You really couldn’t make it up!



To be honest, the scare stories about LCHF diets really p#$$ me off. All the one’s I have researched are all based on complete nonsense and are clearly part of an agenda. Now it is certainly possible that for SOME people, a long term ketogenic diet may not be ideal. But at the moment, there is no evidence to support this either. In the last 30 years the western world has ‘generally’ gone high carb and low fat. Over the past 30 years obesity and chronic disease have exploded. Perhaps, just perhaps there is a more dangerous diet out there and maybe, just maybe, it’s the one we’ve all been told to eat.


Last point. Being chronic, I’ve spent the last 23 years pumping bucket loads of awful drugs into my body, sucking pure oxygen on a daily basis, drinking gallons of energy drinks (last 9/10 years) and experiencing extreme/horrific stress many times a day (and night) for days, weeks and years on end. What do I do now . . . . . NOTHING, except eat a LCHF diet. I’m totally medication, abortive and headache free. I have lost around 30lbs, weigh the same as when I was 16 (now 46), feel amazing, have perfect blood pressure, all other minor health problems have disappeared, I never lack energy, sleep great and have great mental clarity. Before I went keto, got remission and did all those things above to control my clusters (plus lots of other measures i haven't mentioned), nobody said a thing about my long-term health. Now, according to some ‘experts’ and some of my friends (who believe everything they read on the WWW and newspapers), I’m now heading for a premature death! YRCMIU 


Take care all!

Rightsider

Brian took the words from my keyboard before I could type something very similar.

Hi jon019

Thanks for your opinion on my opinions. I have zero problem with that, and I am more than happy for people to disagree with what I wrote.

By the way, I am well aware that correlation does not prove causation. Hence, point number one, though studies on mice, rats, rabbits . .  etc, and 'in-vitro' studies also contributed to my reasoning for that statement.

Take care.

Rightsider

...and nary a fluffy bunny in sight....

Best

Jon

Hey guys. Day 19 of keto for me. I’ve dropped from 200 to 190 already and I do admittedly feel quite a bit better overall. I’ll write a more lengthy post about my cluster situation as well as my double frozen shoulder situation at some point in the future when I’ve done this diet for a few more months, but I’m hopeful over these early returns. I still have shoulder pain but my right shoulder has shown signs of small improvement since doing this.

Anyway, I’m eating bacon daily. I feel pretty good overall, and I am in ketosis pretty strongly. I haven’t had any sugar or bad carbs for 19 straight days, so at least on that front I’m good. Lots of olive oil, veggies, avocados, walnuts and eggs too. No fruit, minimal dairy but I am having cream with coffee every morning.

Again I feel pretty good, but I really need my shoulder disease to retreat just as much as I need to never have another cluster headache.

Are you guys cool with bacon being a part of our respective recoveries? Now learning what I know about my past bad diet and these auto immune issues I’m battling, I want to give my body a chance to heal from it all. I just hope bacon isn’t an impediment to that. I think it’s probaby fine but I do wonder.

Hey, Batch. Having made your delicious and very nutritious butter mix consider putting it onto plastic wrap and rolling it to resemble a section of broom handle. (Ask your wife to show you one.)

Freeze it in the plastic then when you're ready to start cooking the bbq for friends simply unwrap the roll and slice it into nice thick discs which you drop into a jug of iced water and leave on the table so guests can put their own pieces onto their chosen lump of cooked animal.

Other butter mixes include garlic, rosemary and parsely if it's lamb or lime juice and lemon zest for seafood.

Even better is that you can make it weeks in advance.

Thanks for the reply, Batch, as always. Bacon has been a staple of my keto lifestyle as well. I’ll eat maybe 320 kcal worth of it per day.

I’m really going out of my way to incorporate as many green veggies, avocado, raw walnuts, and uncooked olive oil as I can, but I’m glad bacon can be apart of this too. I get the sense that fatty bacon can be nutritious as long as one is not eating sugar and excess carbs and what not.

Anyway, it’s day 21 for me here. In moderate ketosis at the moment. My mind has been clearer and my chronic pain has been down a good percentage. I’m very eager to see where I’m at after a couple months worth of this lifestyle. It’s a great feeling having genuine hope. 

Hey Everyone! Loving this thread. Interesting info, mixed with polite responses. Wow

I started Keto two weeks ago and am loving it so far. I'm doing it to drop some weight before my wedding. I did Atkins when I was 18 and lost quite a bit of weight pretty quickly and all the fitness folks on social media have been raving about Keto, so I thought I would give it a try.

My CH started a few weeks after I turned 16. Back then I treated with prednisone and inderall. It worked for 2 cycles then stopped. Cycles were coming every 3-4 months for about 4-6 weeks. I then started experimenting with shrroms, rc seeds, etc. but never could get that in-line to be effective and reliable.

When I did Atkins at age 18, I noticed quite a while had gone by without a cycle! It has been a long time since then, so I don't remember the exact timing, sorry! But it had been well, well past when I should have experienced a cycle.

I posted about this when I was 18 and actually got shut down pretty hard by a lot of people on these boards. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

It's funny what a difference 18 years make. A huge majority of people on this board back then were of the idea that food has *absolutely nothing* to do with CH. Now I think most people would agree that altering your diet can definitely improve CH.

Anyway, I'm kind of rambling. I guess there are just a few key points I'd like to make:

1) Thank you for being more receptive to people's ideas and not shutting folks down.
2) Every different food we put into our bodies creates a *unique* reaction inside of us and has some sort of *unique* impact on our bodies.

As for 33 year old me? My cycles have been getting further and further apart the older I get. The last couple of cycles had ~3 year remission periods between them. I manage them with Vitamin regimen (shoutout to Batch!) and Oxygen/Ice at home. I basically don't leave the house for 6 weeks, work from home, and my 6 week cycle is really only hellish for about 2 weeks. The other time is actually really manageable.

In the future when a cycle comes, I'm going to do Keto diet and see how it helps.

I know I don't post often, but this board has been a huge part of my life since I was a teenager. I could not have more love for this place!!! <3

Thanks -Chris

Well its coming up 6 months now on the keto lifestyle and it feels like things only continue to get better. Was still getting the very odd weak shadow in the morning at times but now I dont get anything. I even felt confident to have a bit of a cheat day with a small amount of sweet food and 2 beers and still felt fine. Im a picture of health compared to how I was and all my doctors are very happy with what Im doing. My cardiologist is also happy with my heart health aswell and is on board.
If you told me a year ago I would be feeling this good from a diet, I would have never believed you. Its a drastic turn around from being in agony everyday for years to being 100% headache free and full of energy.
I dont count calories, I eat bacon and eggs every morning and a good size lunch and a big dinner with keto deserts before bed. I eat what ever I want as long as its very low carb. Im 78 kgs (171lb) at 6 foot 1 I was about 95kgs (209lb) when I started. My weight has been steady for the last month or so. I also never thought I had that much fat to loose.
Onward and Upwards! wow does it feel good to be normal and im sure as hell not going to take it for granted!

Just a short progress report.
About 9 months now and still feel great. Cluster Headaches and medications are thing of the past for me. Feels like my brain is working better and better in general as each month rolls by. 
Pain Free Wishes To All