I figured this deserved its own thread. 

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"Results
Of the 18 CCH patients, 15 were considered responders to the diet (11 experienced a full resolution of headache, and 4 had a headache reduction of at least 50% in terms of mean monthly number of attacks during the diet). The mean monthly number of attacks for each patient at the baseline was 108.71 (SD = 81.71); at the end of the third month of diet, it was reduced to 31.44 (SD = 84.61)."

This seems to me to be something that goes right along with Batch's vitamin D3 regimen...

Thoughts?  If it weren't already eating a keto diet, i would DEFINITELY see it as being something worth trying...  i mean, come on...  eat more steak, eggs, and chicken, and i could suffer less from the beast?  Why WOULDN'T i try it?

It looks like a keto diet actually reduces LDL, bad cholesterol.  I guess there is something to all those meat eating eskimo who never seem to suffer heart attacks...

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Just a quick update if anyone is interested. I’ve now gone a full week without a single headache or even a glimmer of shadow, except for one night when I had a few glasses of wine at a friend’s 40th birthday party. I had oxygen nearby just in case, but only experienced a mild shadow that passed within 15-20 minutes. If my memory serves me correct, I’ve not had to use the oxygen (certainly Imigran) in weeks. In the week prior to this last one, the very few headaches/shadows I had were all easily aborted with sugar free Red Bull.

Now I may just be hitting an amazingly good patch and this all be complete coincidence. I’ve had one very good patch before after doing one of the ‘alternative’ treatments and did repeat such a treatment about 6-8 weeks ago. However, since doing keto WITHOUT SKIPPING BREAKFAST the trend has been seriously DOWN. To be honest, even when doing keto without breakfast my normal daytime attacks were still down, but the intense and persistent ‘falling to sleep’ attacks went seriously up as the days went on.

Anyhow, if the current absence of attacks continues I’ll start reducing my Verapamil and see what happens. I’m having two empty O2 tanks replaced today. Hopefully, they won’t be needed for a long time!

By the way, in addition to the study outlined in the original post, there is another one from the same team in 2015. I tried to include a link in this post, but as my post count is below 10, I cannot include the link. If you 'Google' the following, it should be the first search result!

‘Researchgate Cluster Headache Improvement During Ketogenic Diet’

Regards
RightSider

So maybe the keto diet and vitamin d3 should be our first go-to options for cluster headaches?  They both seem to be pretty healthy, and both seem to work pretty well. Plus, it doesn't require a doctors prescription.

I certainly prefer it to the cocktail i was on several years ago.  Those meds turned me into a zombie.  Plus, they pretty much ruined my sex life while i was on them...

Thanks Batch and Sean McE. I appreciate your comments.

An update for anyone who’s interested and a bit more detail about things!

I’ve reduced my Verapamil to 180mg a day from 240mg previous. My usual range is 240mg to 480mg. I refuse to go over 480mg due to it making me feel like a zombie, and just put up with attacks and feel sorry for myself when things get bad. I dropped to 180mg a day on Monday. Since then I’ve had no attacks or shadows. I did a beer test on Saturday evening (well, a dry white wine test) and nothing happened. Therefore, I carried on, had a few more and still no shadows or attacks for the rest of the evening. I’m now thinking of dropping to 120mg in a few days time. My verapamil is slow release and I take it all in the morning.

So, just to clarify what I’m doing at the moment, it is as follows . . . .

- KETO/LCHF diet, less than 50g of carbs a day. Probably average around 30g. ZERO SUGAR!
- Three meals a day (breakfast, lunch, evening meal).
- 600mg NAC tablet with breakfast.
- A slightly ‘slimmed down’ version of the D3 regime with breakfast.
- Trying to consume broccoli sprouts everyday with lunch or dinner, when possible. I grow these at home. It's very cheap and easy!

The broccoli sprouts and NAC are to help maximise glutathione production along with the keto diet. My slightly more detailed working theory, which is of course most probably wrong, is that the keto diet works so well for Clusters and Migraines because of its general anti inflammatory effect and/or the increased glutathione levels dealing with ‘histamine issues’ from mast cells. That said, they could be considered to be interlinked and the same process/outcome. Now for the broccoli! The sulforaphane released from chewing the broccoli sprouts drives the Nrf2 pathway. This results in even more glutathione production along with the NAC, which is the limiting factor in glutathione production in the body. Now, all of this could be nonsense. However, as long as it’s working for me and possibl of help to others, I’m more than happy to be completely wrong! 

Note for Sean McE:
I hope you do not mind me commenting on what you said about not being able to do keto. You are more than welcome to disagree and tell me to mind my own business. In my defence, I'm very keen on the diet and I’ve studied it inside out. Including its effects on general health, clusters, migraines, auto-immune disease, other illnesses and quite a lot on it's effects on sporting performance. I could literally bore you to death about it. So, apologies if I do so.  I’m certainly not trying to be a ‘know it all’, I'm just enthusiastic! 

It doesn’t matter what level of bodyfat you have for keto. I reckon my BF% is now around 8-9% and I’ve never had more energy and I never dip. There are many extreme marathon runners (running 100+ mile races) who have less body fat than both of us, that excel on keto/LCHF diets (it’s becoming the diet of choice for these types of athletes). Even the slimmest and smallest of long-distance runners have 100’s of thousands of calories stored in fat. You cannot run out of energy from stored fat, you’d have to be significantly malnourished. Now, the human body can be powered by ketones or glucose (glycogen). Note: Please don’t take offence with this next bit! I strongly suspect that the reason you run out of steam by midday is because you have no fat adaption and rely almost exclusively on glucose (most of the westernised population is the same, as was I). Therefore, you use the approximately 2000 calories of glycogen (that your body can store in the muscles and liver) very quickly, and because you have lost your fat burning ability, you start to crash because you run out of energy. The irony is, that the more frequently you eat carbohydrate the more reliant you become on it, as your body rarely gets the chance to burn fat. Crashing after going hours without complex carbs or sugar is a classic sign of this. It isn’t because you are lean. I am a cyclist, I used to crash on and off the bike if I didn’t eat carbs every two or three hours. I lived on carbs. Since going through the adaption process when you start keto (it’s called the ‘keto flu’ and can be a rough few days) and to this day, I have become more and more ‘fat adapted. It wasn’t long after starting keto that I was able to ride 50+miles on water only and noticed I wasn’t having dips in energy throughout the day/evening any more. If I had the leg strength endurance (which I don't at the moment), I could easily do 100+ miles without any energy bars, drinks or snacks tomorrow. It’s just a question of becoming more ‘fat adapted’ and less reliant on sugar/carbs/glucose etc. I’m the end I guess what I’m trying to say is don’t rule the diet out in the future if your clusters get bad enough. I firmly believe that if the diet works, it’s a far better option than the drugs we all chuck down our throats every day. There are many other benefits of the diet too, I’m my experience and honest opinion. All the best Sean.


Sorry for waffling on!

Kind regards
RightSider

Hi Sean!

Apologies for the delayed reply. Thanks for the positive response, I’m glad you were not offended. Thanks also for the link. Like you say it’s an interesting, informative and balanced article and I agreed with almost all of it. The thing is with keto/LCHF, is that in my opinion it is how we should eat. We are just not designed to eat large amounts of carbs/sugar all day every day, pumping out insulin morning, noon and night. Through all my research, its become clear to me that the modern diet is the very reason there has been a monumental rise in chronic illness across the western world, especially with conditions linked to obesity (T2D, heart disease, PCOS, non alcoholic fatty liver disease, to name a few) and in the area of auto-immune disease. I would even go as far as to say it’s completely obvious what the problem is. Despite a very healthy ‘modern diet’ and plenty of exercise, my partner suddenly came down with an auto immune disease several years ago. We got on top of it well before we both went keto (despite getting nowhere with many doctors). However, since going keto it has completely disappeared. Even illnesses of a genetic origin (clusters?) are massively influenced by diet and when you dig deep down into the science you realise that very few conditions are 100% genetic. If you perform Google searches with ‘ketogenic diet’ and ‘cluster headaches’ or ‘migraines’ you quickly find that there is quite a lot of positive research studies and individual stories out there already. However, diets don’t make money for pharmaceutical companies, so the research is limited and definitely under reported.

As for where the fat goes. Well, your body uses it and reduces your appetite when you don’t need it. It’s become clear now that there is no link between saturated fat and heart disease, and cholesterol theory has long since been laughed away. With LCHF you end up eating what you need and no more. The bodies natural mechanism of balancing eating with burning off energy restores (note: you never see obese wild animals, only those that are storing fat for winter or warmth). Adding large amounts of carbs disrupts this balance due to the effects of continues high insulin. High fat and high carbs is the worst situation to put your body in. You cannot really access your fat stores if you are pumping out insulin all day. Insulin constantly converts excess carbs into lipids that then get stored as fat. You then get hungry very quickly and you eat again. Carbohydrates were always regarded as the fat causing macro nutrient until the 1970’s. There’s a reason why factory farmed livestock are fed grains (carbohydrate). It fattens them up better than anything else!!!

Anyway, enough of my ‘not so expert opinion! I’m still completely free of attacks or shadows. Yesterday I dropped my Verapamil to 120mg a day. I was going to alternate 180mg with 120mg but as they say . . . . . . . ‘he who dares, wins’!

Kind regards
Rightsider

Another short update for anyone interested.

Been on 60mg of Verapamil a day for around a week now and still no shadows or headaches, absolutely nothing! I'm thinking of coming off the Verapamil altogether now after around 21 years on the stuff. However, the only other time time I came off it (after my doc withdrew the prescription due to a low heart rate and put me on Topiramate, which worked great for a few weeks) I ended up in a world of hell.

Interesting times ahead and a serious decision to make!



Regards

RightSider

Sean McE wrote on Oct 2^nd, 2018 at 12:26am:


Your body probably just metabolizes what it needs and dumps the rest.  I have been on a pretty strict keto diet for several years now, and i haven't gained or lost weight.  I am five feet eight inches tall, and i weigh 132 pounds.  I am also extremely physically active due to my job. 

Dropping your verapamil dose slowly is a good approach and since you've got down to 60mg without issues is probably a good indicator that you'll not hit any issues dropping down to zero.

Enjoy being medication free!

And if you do have any issues, the Ouch UK conference is probably a good place for it as you'll be surrounded by experts in CH. But hoping you continue to be pain free for a long time to come.

Great news that you're CH free. I'm not sure I've seen someone write up how hard they tried to ensure they are as you did.

And good to see that ketonic diets are being picked up by top neuros. Every single new approach is a step forward.

I remain intrigued that so much good is coming out of people trying different diets and putting it all out there for the benefit of others.

Who'd have thunk we could ever fight back this way?!

Fair dinkum, ch.com is a good place to live.