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Cluster Headache Help and Support >> Medications, †Treatments, †Therapies >> Keto diet and cluster headaches
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Message started by AubanBird on Aug 17th, 2018 at 10:38pm

Title: Keto diet and cluster headaches
Post by AubanBird on Aug 17th, 2018 at 10:38pm
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?

Title: Re: Keto diet and cluster headaches
Post by pattik on Aug 20th, 2018 at 10:45am
Great find, AubanBird. Thanks for posting. I see that OUCH Italia was involved too. The anti-inflammatory effect of the modified Atkins diet is being researched for other conditions like Alzheimers and epilepsy. The studies I have read still claim to not understand the mechanism. But as long as this diet isn't clogging the arteries, I'm all for checking it out (as much as I can give up my carbs, LOL). It appears to work as an anti-inflammatory as does the D3 regimen. So it's easy to speculate a connection, at least on a molecular level. Thanks again for posting this.

Take care,
Patti

Title: Re: Keto diet and cluster headaches
Post by AubanBird on Aug 21st, 2018 at 12:06pm
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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Title: Re: Keto diet and cluster headaches
Post by RightSider on Sep 15th, 2018 at 11:53am
Hello All!

Iíve been meaning to reply on this thread for quite a while. However, my experience with this topic has not been straightforward and in the interests of clarity, it deserved a little detail. So, Iíve finally got around to it. Iím happy to answer any questions if asked.


Well Iíve been chronic for around 24 years and went keto in April after randomly coming across the story and opinions of a sports doctor called Tim Noakes. Now its only fair to be upfront/honest and say that Iím a massive fan of keto. Initially it was due to the huge amount of research I did and the amazing stories out there about the many benefits of the diet (I also noted the CH study that was mentioned at the start of this thread, and this was the final straw that convinced me to give keto/low carb a go). However, the impact it has had on me has only further convinced me that itís how we should eat, most of the time! Despite not going hungry, Iíve lost 30lbs in weight, starting a 12st 8lb and now around 10st 6lb. That may sound quite low, though Iím only 5ft 9in, but I am a road cyclist when my head lets me! Now that my body runs on ketones (fat!) Iíve been able to burn off serious amounts of body fat whilst out riding since April. Iím cycling faster than ever and feel better than ever. Every single niggling body ache and pain I had before keto has gone (I have always suffered from back pain and its completely disappeared), my skin is better than its ever been, I sleep better and generally have a constant energy level and no dips!

Now what about my head? Well, first of all I can say with all honesty that for me the keto diet has positively impacted my clusters, though itís not been a straightforward experience. I went keto during a particularly bad time with my head (4-6 attacks per 24hrs). After a week or two on the diet the number of attacks I was getting appeared to drop significantly. Though to be honest, it didnít eliminate them, but the general trend was down. However, since then I have had two significant Ďblipsí where my head went crazy (mainly during sleep). I have always had nocturnal attacks, but they have never been the biggest problem for me. These two Ďblipsí were incredible. Both times I started getting VERY STRONG attacks as soon as I was Ďdropping offí to sleep, not randomly throughout the night like usual. Iíd start with one or two attacks at the beginning, but they became progressively persistent and recurrent night after night, up to the point where I was having to abort 10-17 attacks before finally being able to sleep. Suffice to say I became very sleep deprived, especially as I never change my sleeping patterns, nap or try to catch up on sleep. Now, to cut a long story short, I eventually noticed that these weird increases in nocturnal attacks coincided with some 16/8 intermittent fasting I was doing by skipping breakfast (itís usually very easy to skip breakfast when keto, as your appetite drops massively). As soon as I reintroduced breakfast (3-4 boiled eggs with my usual creamy coffees) the attacks subsided over several days. The first time it happened, I thought it may have been coincidence, as I dosed on RC seeds around the same time that I reintroduced breakfast. However, my second attempt at the 16/8 fasting set my head off again, in EXACTLY THE SAME WAY. I reintroduced breakfast and the sleep attacks disappeared once more.

Since reintroducing breakfast for the second time, my attacks have dwindled to a few shadows a day at worst, and I am enjoying many pain free days. Alcohol is still triggering attacks when consumed, though nowhere near the pain levels that usually results in me avoiding it for long periods of time. That being said, I am experimenting with a homemade ĎNAC+VitC+Taurineí potion to reduce the severity of attacks when I decide to drink (thatís a long story which I wonít go into now). So, in all honesty Iím not sure if itís the Ďketo without fastingí, or my Ďpotioní that has significantly reduced any alcohol provoked attacks.

After all that, I would conclude that in my experience the very low carb/keto diet is helping me significantly. BUT . . . . . . . . . . although skipping breakfast is very good for you, I cannot do it personally because it literally sends my head crazy! So its keto for me, but without missing brekkie!

BTW, I suspect that skipping breakfast on a consistently strict basis, somehow messed with my melatonin levels at night. But I guess thatís a discussion for another time!


I hope that's of some interest for someone.

Regards
RightSider

Title: Re: Keto diet and cluster headaches
Post by RightSider on Sep 19th, 2018 at 4:32am
Just a quick update if anyone is interested. Iíve 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 friendís 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, Iíve 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. Iíve had one very good patch before after doing one of the Ďalternativeí 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 Ďfalling to sleepí attacks went seriously up as the days went on.

Anyhow, if the current absence of attacks continues Iíll start reducing my Verapamil and see what happens. Iím having two empty O2 tanks replaced today. Hopefully, they wonít 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!

ĎResearchgate Cluster Headache Improvement During Ketogenic Dietí

Regards
RightSider

Title: Re: Keto diet and cluster headaches
Post by Mike NZ on Sep 20th, 2018 at 3:12am
Looks like a good research paper to read:

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Great to see that it is working for you.

Title: Re: Keto diet and cluster headaches
Post by AubanBird on Sep 25th, 2018 at 3:58pm
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...

Title: Re: Keto diet and cluster headaches
Post by AussieBrian on Sep 25th, 2018 at 11:25pm
I find it intriguing that so many foods and additives are guaranteed triggers for us while other foods and vitamins are proving to be the magic bullet for so many.

It's a weird disease we live with.†

Title: Re: Keto diet and cluster headaches
Post by Batch on Sep 25th, 2018 at 11:59pm
Even if taking vitamin D3 was a wash with respect to preventing cluster headache... and it's not! It really works!† That it helps packing more lumber is reason enough to keep taking it...† ;) ::)

Take care,

V/R, Batch

Title: Re: Keto diet and cluster headaches
Post by RightSider on Sep 26th, 2018 at 5:24am
Interesting comments. Weíll, just to give another update Iíve remained completely attack and shadow free since my last post. So, on Saturday I decided to do an extreme Ďbeer testí to see what would happen. I had a large glass of strong dry white wine on a completely empty stomach. This combination would normally have me diving for the oxygen and ice cubes after 20-60 mins under Ďusualí conditions and a huge battle would commence! But as I said during a previous post, a previous beer test just gave me a very mild shadow. The result . .  8-) . . . nothing! No headache, not even one of those tiny sensations when you think a shadow may be coming on. Therefore, yesterday morning I took the decision to reduce my Verapamil down to 180mg to see what will happen. So far so good, though itís only been 24 hours.

A few personal Ďscientificí thoughts Ė feel free to ignore or ridicule!
I didnít mention this in my original post, as it was long enough and didnít want to stray off the point. But Iím beginning to wonder whether SOME peopleís clusters are due to inadequate GLUATHIONE production somewhere in the brain and its effect on the histamine produced from mast cells. Given the huge amount of reading Iíve done, I could write an essay giving reasons for these thoughts. But I wonít, as I may be talking nonsense and my recent remission from the headaches may be just complete coincidence! However, what I will say is that there appears to be many links between glutathione and clusters. Many of the drugs we take for these headaches influence glutathione production, D3 improves glutathione production, light levels affect it (via D3 production?), NAC does the same (ĎAcetiumí trial for clusters???) and guess what, a low carb/keto diet is believed to improve glutathione production. Alcohol triggers attacks via the conversion of ethanol to acetalaldehyde and the subsequent histamine release causing vasodialtion. Guess whatís involved in the neutralisation of acetalaldehyde . . . . . . . . . glutathione!

Recently, I started growing and consuming ĎBroccoli Sproutsí as part of my keto lifestyle (itís not a diet to be fair). Without going into detail, broccoli sprouts are massively linked to increased glutathione production (via sulflorophane/gene expression/Nrf2 pathway), amongst MANY other positive things which I wonít go into now. I am also thinking of adding a NAC supplement every morning with my D3 regime. The limiting factor in actual Glutathione production in the body is usually Cysteine. So, it makes sense to give the body the key raw ingredient to make it. We shall see what happens!

Anyhow, just a few of my thoughts. Iím happy to be corrected on anything!

Note: I have done a number of different versions of the D3 regime for many years. Itís not a magic bullet for me, though I believe it helps a little. Regardless of whether it helps my head or not, I still believe itís a very healthy thing for me to do!

Take care all.
Rightsider




Title: Re: Keto diet and cluster headaches
Post by Batch on Sep 26th, 2018 at 7:18am
Hey Rightsider,

Fascinating post!  I think you're spot on with the Mast Cell histamine link to CH.

Take care and keep it coming...

V/R, Batch

Title: Re: Keto diet and cluster headaches
Post by Sean McE on Sep 30th, 2018 at 3:17pm
    No kan do keto! With my height/weight ratio Iíve got virtually no fat and keto relies on putting the body into ketosis to burn fat. I learned a long time ago that with my metabolism Iíve got to consume a fair amount of complex carbohydrates midday or I run out of steam and have no energy whatsoever. In the past though Iíve added NAC to the D3 regimen and I think it helped but canít tell if it really made a difference due to vagaries of the beast.
     Sean

Title: Re: Keto diet and cluster headaches
Post by RightSider on Oct 1st, 2018 at 4:06pm
Thanks Batch and Sean McE. I appreciate your comments.

An update for anyone whoís interested and a bit more detail about things!

Iíve 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 Iíve 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. Iím 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 Iím 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 Ďslimmed downí 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 Ďhistamine issuesí 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 itís working for me and possibl of help to others, Iím more than happy to be completely wrong!  ;D

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 Iíve 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.  Iím certainly not trying to be a Ďknow it allí, I'm just enthusiastic!  :)

It doesnít matter what level of bodyfat you have for keto. I reckon my BF% is now around 8-9% and Iíve 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 (itís becoming the diet of choice for these types of athletes). Even the slimmest and smallest of long-distance runners have 100ís of thousands of calories stored in fat. You cannot run out of energy from stored fat, youíd have to be significantly malnourished. Now, the human body can be powered by ketones or glucose (glycogen). Note: Please donít 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 isnít because you are lean. I am a cyclist, I used to crash on and off the bike if I didnít eat carbs every two or three hours. I lived on carbs. Since going through the adaption process when you start keto (itís called the Ďketo fluí and can be a rough few days) and to this day, I have become more and more Ďfat adapted. It wasnít long after starting keto that I was able to ride 50+miles on water only and noticed I wasnít 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. Itís just a question of becoming more Ďfat adaptedí and less reliant on sugar/carbs/glucose etc. Iím the end I guess what Iím trying to say is donít rule the diet out in the future if your clusters get bad enough. I firmly believe that if the diet works, itís a far better option than the drugs we all chuck down our throats every day. There are many other benefits of the diet too, Iím my experience and honest opinion. All the best Sean.


Sorry for waffling on!

Kind regards
RightSider

Title: Re: Keto diet and cluster headaches
Post by Sean McE on Oct 2nd, 2018 at 12:26am
Hello Rightsider,† † No offense taken 😀, Iím a firm believer that one Can teach an old dog new tricks if the old dog is inquisitive enough. More questions hopefully lead to more answers. Your response caused me to dig a little deeper....found a site that seemed to offer an unbiased view into a topic I know little about...pretty interesting.† †START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE †It does seem tough to stay on for an extended time. This raises a question for me...as I also consume a lot of fat....where is it going?† I havenít gained or lost an ounce in 50 years.🤔
† †† †
† †Thanks, Sean

Title: Re: Keto diet and cluster headaches
Post by RightSider on Oct 5th, 2018 at 6:04am
Hi Sean!

Apologies for the delayed reply. Thanks for the positive response, Iím glad you were not offended. Thanks also for the link. Like you say itís 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 itís completely obvious what the problem is. Despite a very healthy Ďmodern dietí 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 Ďketogenic dietí and Ďcluster headachesí or Ďmigrainesí you quickly find that there is quite a lot of positive research studies and individual stories out there already. However, diets donít 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 donít need it. Itís 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 1970ís. Thereís a reason why factory farmed livestock are fed grains (carbohydrate). It fattens them up better than anything else!!!

Anyway, enough of my Ďnot so expert opinion! Iím 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 . . . . . . . Ďhe who dares, winsí!

Kind regards
Rightsider



Title: Re: Keto diet and cluster headaches
Post by RightSider on Oct 13th, 2018 at 11:47am
Short update!

Still strict keto and continuing to have the Broccoli sprouts and NAC.

Eight days with Verapamil at 120mg and still no headaches or shadows, even when I've treated myself to an alcoholic drink. I also got away with a seriously long and steaming hot bath after a glass of wine (what I would call a very serious 'beer test'!!!). Dropping to 60mg a day tomorrow.

Regards

RightSider

Title: Re: Keto diet and cluster headaches
Post by RightSider on Oct 25th, 2018 at 5:18am
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!

[smiley=undecided.gif]

Regards

RightSider

Title: Re: Keto diet and cluster headaches
Post by Mike NZ on Oct 27th, 2018 at 7:32pm
60mg a day of verapamil is a very low dose with most people needing 240-360mg a day.

I wouldn't be surprised if you're out of cycle and you don't really need it at all.

Title: Re: Keto diet and cluster headaches
Post by AubanBird on Oct 29th, 2018 at 12:33pm

Sean McE wrote on Oct 2nd, 2018 at 12:26am:
Hello Rightsider,† † No offense taken 😀, Iím a firm believer that one Can teach an old dog new tricks if the old dog is inquisitive enough. More questions hopefully lead to more answers. Your response caused me to dig a little deeper....found a site that seemed to offer an unbiased view into a topic I know little about...pretty interesting.† †START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE †It does seem tough to stay on for an extended time. This raises a question for me...as I also consume a lot of fat....where is it going?† I havenít gained or lost an ounce in 50 years.🤔
† †† †
† †Thanks, Sean


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.†

Title: Re: Keto diet and cluster headaches
Post by RightSider on Oct 29th, 2018 at 5:36pm

Mike NZ wrote on Oct 27th, 2018 at 7:32pm:
60mg a day of verapamil is a very low dose with most people needing 240-360mg a day.

I wouldn't be surprised if you're out of cycle and you don't really need it at all.



Hi Mike.

No cycles for me, chronic since 21. That said, i cycle between good times, bad and terrible. Only ever had one total break from attacks (longer than a week or so) and that was a few years ago and after doing RC seeds. They worked brilliantly for quite a few months but eventually lost their effectiveness.

I am only on 60mg because I've been dropping the dose very slowley from 360mg a few months ago. I suspect that it's almost pointless but I'm being cautious. The last and only time i was off verapamil turned into a nightmare. So, its a case of 'once bitten, twice shy'!!!

I haven't had an attack for around 7 weeks now. It was around 9 or 10 weeks ago when I figured out that 16/8 fasting (which I was doing as well as keto) was spoiling the improvement I was getting from the diet. As soon as breakfast was re-introduced, the weird nocturnal attacks I was experiencing simply faded away. Much like they did when I was keto and having breakfast around 4-5 months ago. I was dropping the verapamil dosage then, from 360 or 480mg.


Coming off the verapamil altogether next week. I'm travelling to an OUCK UK conference at the weekend which involves a long drive and an overnight stay away from home. I though it would be best not to push my luck and wait until Monday before I become med free. Which will be the first time in 24+ years!† :)

Regards

RightSider

Title: Re: Keto diet and cluster headaches
Post by Mike NZ on Oct 30th, 2018 at 1:40am
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.

Title: Re: Keto diet and cluster headaches
Post by RightSider on Nov 11th, 2018 at 12:45pm
Hello all!

Just spent the week off the Verapamil, meaning I've spent the last 7 days medication free for the first time in over 23 years. Total number of attacks, shadows or hint of shadows = ZERO!

I cant even trigger an attack now either. In the interests of Science (seriously! ;D), the other day I did my upmost to try and trigger an attack. I purposely exercised to become dehydrated. After climbing off my bike (well, my bike and turbo trainer), and on a seriously empty stomach, I drank two glasses of strong dry white wine, consumed some very 'nitrate rich' food and climbed into a steaming hot bath for a soak. Three months ago that would have resulted in two cans of Redbull, lots of huffing on O2 (which would most likely have failed), ice packs around my head and neck, an ice cube in the roof of my mouth and eventually the Imigran shot would be jabbed in the leg. Nothing happened and I'm not sure what else I can add to that. I would hope that it speaks for itself!

I attended an OUCH-UK conference last weekend (fantastic day as usual and thanks to them as usual, they are awesome). Last slide on a presentation by a top neuro about future possible treatments . . . . . . . 'Ketogenic Diets'! Suffice to say my hand went straight up.† :D

I'll stop with the updates now unless my clusters return. If they come back I will post ASAP. However, I will of course answer any questions if they appear.

Take care everyone!

RightSider

Title: Re: Keto diet and cluster headaches
Post by Mike NZ on Nov 12th, 2018 at 12:11am
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.

Title: Re: Keto diet and cluster headaches
Post by NicolŠs on Nov 20th, 2018 at 10:30pm
Hi all!

I've waited for a few weeks to write this post so as to be sure about all of this. RightSider: thank you very much for your insights!!

Summary:

I went through a cycle that lasted about 8 weeks. The very night I started a very low CH diet (no more than 20 grams of Carbs per day), the attacks went from 3-4 per night to 2 attacks easily abortable with no more than 2 minutes O2.

After seven days from starting on low CH diet, I had to take Prednisone to abort the cycle (I had to travel by plane and spend one night in another city because of work reasons).

But after the pred taper went off, I had no CH back. And since then, no more CH.

Long story:

I began a new cycle in August 20. The attacks were consistent every night from August 27 to October 03, with only 3 PFN plus two periods PFN due to Prednisone (lasting 5 and 10 days each one).

All these years since 2012, I've been on Batch's formula of D3 and its cofactors.

The attacks hit almost always every hour after sleeping, usually no more than 4 attacks per night (average 3 to 4 attacks).

Important fact: in this cycle something unusual happened: I had 3 attacks in the day (two of them at work). This is something that has happened very few times before (I'm clusterer since at least 2005). After reading this post, I realized something very interesting: during the hours just before those 3 day-attacks I ate big amounts of carbs:

  • One time two dishes of rice with roasted meat.
  • One time a big waffle that was made with lots of sugar.
  • A third time that I don't remember today exactly which carb I ate, in big quantity.


So, I saw clearly that the best option I had was to get into this train, do the very low carb diet and see what should happen.

The results, as I told you, have been very promising.

It is a pity that I had to take prednisone in order to fly and spend one night in another city. One could say that I's harder to know precisely the day when the cycle ended. All I know is that when I'm in cycle, I have some sort of a slight Neuralgia in the scalp (at every moment), in the same half where I'm getting hit. Well, after fourteen days on diet (and seven on Prednisone), I stopped feeling that Neuralgia. So I think that around that day (October 10th) the cycle actually ended.

Conclusions:


  • I think the very low carb diet actually helped me to soften the cycle and eventually stop it.
  • Being on this diet has been extremely easy for me:
    • No problem to stop eating carbs (even though I'm a big fan of potatoes and bread).
    • Only a light Keto Flu that hit around two weeks after beginning the diet. Muscular pain, sometimes a pain just below the kidneys, and the typical symptoms of a flu, minus the "respiratory ones".
    • I lost only 5 Kg (11 pounds). I'm now at 79 Kg (174 pounds) and I'm 1.89 meters (6 feet 2 inches) tall.

  • I also visited a Nutritionist, that had no problems with me being in this diet. Glucose normal, Ketone bodies in expectable levels, HDL and LDL Cholesterol in normal levels.
  • I'm not quite sure if what I've done is a Keto diet, Atkins diet or just a very low carbs diet, but anyway, limiting carbs to no more than 20 grams per day and increasing good fats and proteins is all what I did.


I'm eager to tell you any detail should you need or want to know more about them.

Best regards to each and everyone of you!

Title: Re: Keto diet and cluster headaches
Post by AussieBrian on Nov 20th, 2018 at 11:00pm
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.

Title: Re: Keto diet and cluster headaches
Post by RightSider on Nov 23rd, 2018 at 3:03pm

NicolŠs wrote on Nov 20th, 2018 at 10:30pm:
Hi all!

I've waited for a few weeks to write this post so as to be sure about all of this. RightSider: thank you very much for your insights!!

Summary:

I went through a cycle that lasted about 8 weeks. The very night I started a very low CH diet (no more than 20 grams of Carbs per day), the attacks went from 3-4 per night to 2 attacks easily abortable with no more than 2 minutes O2.

After seven days from starting on low CH diet, I had to take Prednisone to abort the cycle (I had to travel by plane and spend one night in another city because of work reasons).

But after the pred taper went off, I had no CH back. And since then, no more CH.

Long story:

I began a new cycle in August 20. The attacks were consistent every night from August 27 to October 03, with only 3 PFN plus two periods PFN due to Prednisone (lasting 5 and 10 days each one).

All these years since 2012, I've been on Batch's formula of D3 and its cofactors.

The attacks hit almost always every hour after sleeping, usually no more than 4 attacks per night (average 3 to 4 attacks).

Important fact: in this cycle something unusual happened: I had 3 attacks in the day (two of them at work). This is something that has happened very few times before (I'm clusterer since at least 2005). After reading this post, I realized something very interesting: during the hours just before those 3 day-attacks I ate big amounts of carbs:

  • One time two dishes of rice with roasted meat.
  • One time a big waffle that was made with lots of sugar.
  • A third time that I don't remember today exactly which carb I ate, in big quantity.


So, I saw clearly that the best option I had was to get into this train, do the very low carb diet and see what should happen.

The results, as I told you, have been very promising.

It is a pity that I had to take prednisone in order to fly and spend one night in another city. One could say that I's harder to know precisely the day when the cycle ended. All I know is that when I'm in cycle, I have some sort of a slight Neuralgia in the scalp (at every moment), in the same half where I'm getting hit. Well, after fourteen days on diet (and seven on Prednisone), I stopped feeling that Neuralgia. So I think that around that day (October 10th) the cycle actually ended.

Conclusions:


  • I think the very low carb diet actually helped me to soften the cycle and eventually stop it.
  • Being on this diet has been extremely easy for me:
    • No problem to stop eating carbs (even though I'm a big fan of potatoes and bread).
    • Only a light Keto Flu that hit around two weeks after beginning the diet. Muscular pain, sometimes a pain just below the kidneys, and the typical symptoms of a flu, minus the "respiratory ones".
    • I lost only 5 Kg (11 pounds). I'm now at 79 Kg (174 pounds) and I'm 1.89 meters (6 feet 2 inches) tall.

  • I also visited a Nutritionist, that had no problems with me being in this diet. Glucose normal, Ketone bodies in expectable levels, HDL and LDL Cholesterol in normal levels.
  • I'm not quite sure if what I've done is a Keto diet, Atkins diet or just a very low carbs diet, but anyway, limiting carbs to no more than 20 grams per day and increasing good fats and proteins is all what I did.


I'm eager to tell you any detail should you need or want to know more about them.

Best regards to each and everyone of you!



Hi NicolŠs

Thatís 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 Ďwatch out for those carbsí!† ;D

Regards

RightSider

Title: Re: Keto diet and cluster headaches
Post by joyisnow77 on Mar 3rd, 2019 at 11:47am
Extremely interesting Rightsider! Many thanks for your kind follow-ups and thorough explanations† 8-) Most importantly, congrats on the new PF life  [smiley=clap2.gif]

I might add that, as many of us are smokers, glutathion levels shows to be significantly lower in smokers. Glutathione is linked to serotonine levels as well in complex ways .

I will add NAC to my D3 regimen, add the broccoli sprouts and start the ketogenesis diet :)

Do you use an NAC supplements? What kind, posology and doseage would you recommend ?

Title: Re: Keto diet and cluster headaches
Post by RightSider on Mar 4th, 2019 at 4:07pm

Hi Joyisnow77

Before I get onto your post, Iíd 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, Iíd say Iíve 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. Itís like 25 years of clusters never happened!

Thanks for your kind words and other comments. Itís interesting what you say about smokers and glutathione. However, I strongly believe the link between smoking and clusters is only an Ďassociationí. 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 Ďkickí from nicotine and find it very hard, if almost impossible to withdraw from it. I could be wrong, but thatís my simplified but honest opinion! Now, as for the NAC, I just buy the cheapest brand with decent reviews on Amazon whenever Iím 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. Iíve remained headache free. That said, Iíll 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+. Itís a massively important chemical/molecule involved with energy metabolism and you produce more when in ketosis. Iím not going to go into detail now, because Iím 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 donít think a high carb causes them either. We can never be cured of this condition because itís 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 doesnít 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 itís 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 Ďketone estersí 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. Iíve 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 itís had on my health (in general), Iíve not felt it necessary to look for a substitution. So, Iíve 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 Iím 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!

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

Regards

Rightsider

Title: Re: Keto diet and cluster headaches
Post by CHDAN on Apr 8th, 2019 at 8:41pm
I to have been having remarkable success like rightsider. Being in Cluster Headache Hell everyday for a few years and having everything fail. About 3 months ago I stumbled across the Keto chronic Cluster Headache trial and also this post. I decided that I have to give this a good crack so I started Jan 5th. I didnt notice any benefits fo rabout 4 or 5 weeks then I had about a 50% reduction for a few weeks and then I started only waking up with shadows then one day out I had no pain no shadows no nothing! that turned into 2 days the 3 ect ect. Havent had to abort a headache for well over a month now.  I get a shadow about once a week to a fortnight, they are so weak it doesn't concern me.

For the first time in years I feel like a normal person who can smile again! after 3 months I feel like the benefits keep increasing as Im feeling better and better as each week passes. Lost about 10kgs too.

Title: Re: Keto diet and cluster headaches
Post by Mike NZ on Apr 9th, 2019 at 1:00am
Absolutely wonderful news. The keto diet is great for headaches of all kinds, plus it can help shed extra weight too.

Title: Re: Keto diet and cluster headaches
Post by AussieBrian on Apr 9th, 2019 at 2:04am
I remain thrilled about anything that helps a ClusterHead but I just came across a couple of articles that suggest the keto diet may not be entirely safe or recommended for everyone.

While making no judgement at all,† one way or the other,† I suggest those who are using this method google† 'keto diet dangerous'† and have a little read to ensure they have made a properly informed decision.

Knowledge is the only key we have,

Brian down under.


Title: Re: Keto diet and cluster headaches
Post by RightSider on Apr 9th, 2019 at 5:38am
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, Iíve 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 Ďobjectivityí 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 wonít! Iíve 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 Ďjunk statusí rating.

2 The conclusions drawn from this Ďunreliable evidenceí 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 Iíve 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 canít stress that enough. Most of them are also based on diets that arenít 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 RCTís (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 Ďexpertsí (with a slightly more objective opinion) say that more research is needed to see if ketogenic diets are safe. What? Isnít millions of years of evolution good enough for you? There has NEVER been any long term study on the safety of HCLF diets, yet weíve been repeatedly told to eat one. Oh, and lets not forget the introduction of dietary guidelines in the 1980ís (which told us all to eat a HCLF diet) has coincided perfectly with a worldwide explosion of obesity and chronic disease. You really couldnít make it up!




To be honest, the scare stories about LCHF diets really p#$$ me off. All the oneís 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 Ďgenerallyí 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, itís the one weíve all been told to eat.


Last point. Being chronic, Iíve 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. Iím 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 Ďexpertsí and some of my friends (who believe everything they read on the WWW and newspapers), Iím now heading for a premature death! YRCMIU† ;D


Take care all!

Rightsider

Title: Re: Keto diet and cluster headaches
Post by AussieBrian on Apr 9th, 2019 at 6:19am
A great post,† RightSider,† and it perfectly proves my suggestion.

We must all look at all the information,† for and against,† so each of us can make an informed decision on how we'll slay this monster.

This is what makes ch.com such a wonderful place to live!




Title: Re: Keto diet and cluster headaches
Post by Mike NZ on Apr 10th, 2019 at 3:43am
Brian took the words from my keyboard before I could type something very similar.

Title: Re: Keto diet and cluster headaches
Post by jon019 on Apr 12th, 2019 at 10:35pm
Hiya Rightsider...another rightsider here....


RightSider wrote on Apr 9th, 2019 at 5:38am:
Hi Brian, CHDAN & everyone else!

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 wonít! Iíve tried to be brief and to the point.

That's fair...good onya...I have an opinion too...being a clusterhead and therefore a skeptic (find that necessary for survival).† full disclosure: not on a keto diet, have not researched, have some general thoughts pro and con that are unimportant to anyone but myself....

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 Ďjunk statusí rating.

[b]...WOW that's BROAD...that's the entire field..believe NO ONE?? that's dangerous. my first, thought, for ANY research is: "source"...what is the reputation, the agenda, the 'mission' so to speak. that weeds out a whole lotta garbage...but not ALL. second: "follow the money" who is funding and what is their expectation. BE CAREFUL, corporate America funds all kinds of research...and it's not automatically garbage nor self serving....


2 The conclusions drawn from this Ďunreliable evidenceí 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.

...confirming your own conclusion there brother. Of course there's a lotta shit out there. it's really shit in-shit out...and saying it's ALL shit don't MAKE it all shit. capitalism and a "free" society do have costs...and MOST ASSUREDLY it's "buyer beware"...so I'm not disagreeing, but cautioning re generalities

3 I cannot stress point 2 enough!

...ever talk to an x smoker re smoking...they tend to be adamant...

4 All of the studies Iíve 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 canít stress that enough. Most of them are also based on diets that arenít 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.

...'all the studies I'VE come across..." is not ALL the studies


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

...well...ok...i'm sure you're a fine fellow...but I don't have to believe that...ya coulda thrown in "yet"...or cited studies showing it WAS good for ya

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.

well...wow...that's a whole other subject...I'll hold my opinion

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!

...like I said...skeptic here...I try and keep my paranoia in check. no illusions re food/pharm (or oil and energy, or banking, or military/industrial, or yadda yadda for that matter), but personally, I think the spawn of Satan dwells in the "health insurance" industry. food and pharma are giant steramrollers... with BILLIONS to burn and they ain't scared of shit....keep yur head on a swivel

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

Öparaphrasing a pre-eminent member here: correlation is not causality.....what about our sedentary lifestyle, environmental pollutants, dangerous food additives, over work/underpay, advances in medical science that extends folks lives and allows for more of the ailments of aging, and on and on.........?

Best

Jon


...another man's opinion...ÖÖ.

Rightsider


Title: Re: Keto diet and cluster headaches
Post by RightSider on Apr 14th, 2019 at 4:03am
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

Title: Re: Keto diet and cluster headaches
Post by RightSider on Apr 14th, 2019 at 2:25pm
New paper just out on migraines and ketosis. May be of interest to some?

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Would be interesting to see if a BHB supplement or ketone ester could help with clusters. If it does, it could be a simple/viable med free option for episodic sufferers. Though the far more potent ketone esters cost a small fortune!


Title: Re: Keto diet and cluster headaches
Post by jon019 on Apr 14th, 2019 at 2:50pm
...and nary a fluffy bunny in sight.... 8-)

Best

Jon

Title: Re: Keto diet and cluster headaches
Post by AubanBird on Apr 15th, 2019 at 12:32am

AussieBrian wrote on Apr 9th, 2019 at 2:04am:
I remain thrilled about anything that helps a ClusterHead but I just came across a couple of articles that suggest the keto diet may not be entirely safe or recommended for everyone.

While making no judgement at all,† one way or the other,† I suggest those who are using this method google† 'keto diet dangerous'† and have a little read to ensure they have made a properly informed decision.

Knowledge is the only key we have,

Brian down under.



Very fair point.†

While catching up on this thread, i was thinking...† there isnt a specific ketogenic diet.† Everyone has their own version of it.† Some people go straight to red meats and fats and almost nothing else, while others try to include as much leafy greens as possible.†

Personally, i believe that a more varied diet is better.† It goes back to the reason you dont eat a carnivores liver...† too much of a good thing can be toxic.† But i have an unusual diet, so i figured i would share it.† It changes from day to day, but ill try to include most of what i eat when im away and when i am home.

When home, i eat a lot of microgreens, eggs, and every kind of meat.† I eat a lot of fat in red meats, mainly because i like it.† I have always liked the fatty parts of a steak.† I grow my own microgreens both at home and away.† Sunflowers, rape sprouts, broccoli, and radish mostly.† If i am home in the summer, i also collect and eat a lot of wild mustard, curly dock, greater plantain, narrow leaf(ribwort) plantain, dandelion, wild onion, kudzu, sheeps sorrel, and chickweed.† They all grow abundantly on my property.† I go easy on the sheeps sorrel and curly dock because they are both high in oxylates, but i still probably eat more than i should...† I also grow and occasionally eat mealworms.† They mix well with a soup i make out of sheeps sorrel.† I occasionally eat spiders, grasshoppers, and crickets as well.†

Anyway, when i am deployed, i usually eat eggs and veggies, with occasional meats.† My main source of protien is usually eggs in third world countries.† Sometimes bugs, if a local shows me which ones are safe and how to prepare them.† I also eat local weeds, again if i can find a local to show me which ones are safe.†

Basically, i eat a lot of different things.† I have known people who tried to switch to a ketogenic diet and pretty much just ate nothing but red meat, and they suffered for it.† I wouldn't reccomend it...


My suggestion to anyone trying to go keto is to maintain a varied diet.† I have never focused on trying to build up ketones in my body.† I dont try to cram extra fat into my diet.† I just avoid carbs, but ill eat just about anything else.† Unless of course all i have is MRE's.†

If anyone is feeling adventurous and wants to try collecting wild foods, have someone show them to you first.† Learn their identifying characteristics.† It is not hard to learn, just dont learn it from a book the first time you try it.† I cant stress this enough!† And if you want to try eating a bug, cook it first.† Especially spiders.† Most of them are safe to eat after they are cooked, but you probably dont even want to know what COULD be growing inside them...†

Anyway, im glad to hear that others are finding relief by going keto.† Just remember to keep a varied diet.† Meat alone doesnt have everything...


Title: Re: Keto diet and cluster headaches
Post by Constantine on Apr 26th, 2019 at 12:38am
Hey guys. Day 19 of keto for me. Iíve dropped from 200 to 190 already and I do admittedly feel quite a bit better overall. Iíll write a more lengthy post about my cluster situation as well as my double frozen shoulder situation at some point in the future when Iíve done this diet for a few more months, but Iím hopeful over these early returns. I still have shoulder pain but my right shoulder has shown signs of small improvement since doing this.

Anyway, Iím eating bacon daily. I feel pretty good overall, and I am in ketosis pretty strongly. I havenít had any sugar or bad carbs for 19 straight days, so at least on that front Iím 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 Iím battling, I want to give my body a chance to heal from it all. I just hope bacon isnít an impediment to that. I think itís probaby fine but I do wonder.

Title: Re: Keto diet and cluster headaches
Post by Batch on Apr 26th, 2019 at 7:18am
Hey Constantine,

Bacon is a staple for me on the Atkins-Keto diet.  For a real treat, I chop up 3 to 4 slices of slightly crisp but not over done bacon, add one small jalapeŮo pepper (split with seeds and placenta scraped out, rinsed then chopped in very small pieces) in a blender, then melt two sticks of butter and pour into the mix and buzz for a few seconds.  I pour it into a tub I can seal and refrigerate. 

A scoop of this bacon-jalapeŮo flavored butter allowed to melt on top of a steak, hamburger, broiled/grilled fish, shrimp or lobster and steamed veggies brings out a wonderful flavor that will make you, your family and guests want more...

Take care,

V/R, Batch

Title: Re: Keto diet and cluster headaches
Post by AussieBrian on Apr 26th, 2019 at 11:49pm
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.

Title: Re: Keto diet and cluster headaches
Post by AussieBrian on Apr 26th, 2019 at 11:51pm
We now return to our regular program.

Title: Re: Keto diet and cluster headaches
Post by Constantine on Apr 27th, 2019 at 4:54pm
Thanks for the reply, Batch, as always. Bacon has been a staple of my keto lifestyle as well. Iíll eat maybe 320 kcal worth of it per day.

Iím really going out of my way to incorporate as many green veggies, avocado, raw walnuts, and uncooked olive oil as I can, but Iím 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, itís 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. Iím very eager to see where Iím at after a couple months worth of this lifestyle. Itís a great feeling having genuine hope.  :)

Title: Re: Keto diet and cluster headaches
Post by Mike NZ on Apr 27th, 2019 at 8:57pm
I'm just over 2 months in and it has done wonders.

The effects have been, so far:
  • lost over 14Kg (over 2 stone)
  • a lot more energy
  • migraines have gone from multiple per week (even with D3) to maybe once a month


I do miss sweet stuff but then I look at what I've benefited from by avoiding it too.

Title: Re: Keto diet and cluster headaches
Post by chrismo5555 on Jun 1st, 2019 at 8:49am
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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

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

Title: Re: Keto diet and cluster headaches
Post by pattik on Jun 1st, 2019 at 9:12am
Awesome post, Chris. I enjoyed reading the old thread. I canít really add much, since I havenít tried it yet, but Iím just happy to know you have kept track of and benefitted from this site all these years. Thanks for posting and pointing out how viewpoints can change. Congrats on your upcoming wedding! :)
Patti

Title: Re: Keto diet and cluster headaches
Post by CHDAN on Jun 12th, 2019 at 11:41pm
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!

Title: Re: Keto diet and cluster headaches
Post by Constantine on Jul 23rd, 2019 at 4:25pm

CHDAN wrote on Jun 12th, 2019 at 11:41pm:
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!


This post made my day. Thank you for this.

As for me... 109 days now I think? Something like that. No backsliding. Hashtag Keto Life.

I've gone from 200 to 176. I feel great. Only mild shadows at times, but overall, what a blessing this has been. My next cycle was due around July 15th, so every day has been nerve-wracking since, but the cycle just hasn't shown up.

Fingers crossed this is the answer to my prayers. Clusters since 1996, so if this is real, I'm going to have a chance at a full life finally. I'll update you guys in a couple months at the latest.

Have a great day, everyone. I love you all.

Title: Re: Keto diet and cluster headaches
Post by CHDAN on Aug 23rd, 2019 at 2:55am
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

Title: Re: Keto diet and cluster headaches
Post by Mike NZ on Aug 26th, 2019 at 2:34am
Wonderful news, although you might need to change your username from CHDAN to just DAN, which is a distinct step forward - long may it continue!

Title: Re: Keto diet and cluster headaches
Post by RightSider on Sep 6th, 2019 at 2:35pm
Hey everyone!

Itís been great to catch up on the positive updates in this message thread. So, just to add to the positive vibes I thought Iíd give an update on my situation.

Well, Iíve now gone a full year without a single attack (give or take a few days, or possibly week). Nothing more than a VERY OCCASIONAL mild sensation, or as like I to call it, a shadow of a shadow! I went medication free on the 5th November 2018. Therefore, still a couple of months to a medication free year without attacks. So, Iíve basically gone from 24 years of chronic clusters (around 1000 attacks per year) to a completely normal life.† No more meds, oxygen, Imigran, energy drinks, ice packs, supplements, SAD lamps and sleep restrictions for me! I can drink a beer with no problems, though to be fair I donít as being keto, itís dry white wine or spirits with diet mixers when I indulge. Never felt healthier or fitter in my entire life. My latest blood test results put me at a uber low risk of CVD and all other previous minor health issues I had before going ketogenic have continued to be absent. Itís also been nice to fit into the same size jeans that I used to buy when I was 16. Never thought that would happen at 46!† :D I still find it hard to believe how everything has changed. Itís like 24 years of headaches never happened!

I had the privilege of being a speaker at the OUCH-UK summer conference a few months ago. There was quite a lot of interest in what I had to say, and I did meet a few people who also have had great success by going ketogenic. One of the neuroís who spoke at the conference also highlighted the success of the ketogenic diet in clinical trials. Itís just a shame that official Ďnutritional guidelinesí prevent many neuroís from recommending the diet as a treatment. One headache specialist did say to me that they sometimes Ďmentioní it to sufferers, but often found a lack of belief, willingness to change diet, or fear of fat ( ::)) as barriers to patients trying it. Plus, the fact is that some suffers just want a pill. Personally, I would have tried anything in the past to rid me of the beast. Actually, apart from wearing magnets, I probably did! Oh, how I loved pouring capsaicin cream down my right nostril for weeks on end, to name one of many examples!

On a related matter, even though Iíve been keto for well over a year I have never monitored ketone levels in my blood. When I first started the diet, I did use the urine strips to check that I was in ketosis. However, after a few weeks they stop working as your body becomes more efficient at using ketones. Given that the weight was falling off me, and the fact that I was able to cycle for hours and hours on water, I knew I was ketogenic (or Ďfat adaptedí in exercise terms). However, I have just purchased a blood ketone monitor for investigative purposes. I will be checking my levels over the next few months to see if the Ďshadow of a shadowí sensation I get (every 3-4 weeks) coincides with a drop in my ketone levels. Iím not sure it will to be fair. I have had the odd day in the past twelve months when I have consumed enough carbs to drop out of ketosis and had no sensations (e.g. a mountain of cheesecake after my Christmas dinner!). This is something that many people with epilepsy have noticed, in that a period prolonged period of ketosis provides benefits beyond the resumption of a more standard diet. Anyhow, for anyone interested, Iíve done a couple of tests so far and got ketone blood levels of 1.4 and 1.5 mmol/l. Both those days were exercise free. So, it will be interesting to see what I get after a decent ride on my bike.

Take care all.

Rightsider

P.S. If anyone tell me that magnets have helped, I will be seriously annoyed!† ;D

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