Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Pages: 1 2 3 
Send Topic Print
Keto diet and cluster headaches (Read 5002 times)
AubanBird
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 245
everywhere...
Gender: male
Keto diet and cluster headaches
Aug 17th, 2018 at 10:38pm
 
I figured this deserved its own thread. 

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

"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?
Back to top
  
 
IP Logged
 
pattik
CH.com Alumnus
***
Offline




Posts: 2600
Wisconsin, USA
Gender: female
Re: Keto diet and cluster headaches
Reply #1 - 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
Back to top
  
 
IP Logged
 
AubanBird
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 245
everywhere...
Gender: male
Re: Keto diet and cluster headaches
Reply #2 - 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...

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Back to top
  
 
IP Logged
 
RightSider
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: Keto diet and cluster headaches
Reply #3 - 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
Back to top
  
 
IP Logged
 
RightSider
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: Keto diet and cluster headaches
Reply #4 - 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
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3780
Auckland, New Zealand
Gender: male
Re: Keto diet and cluster headaches
Reply #5 - Sep 20th, 2018 at 3:12am
 
Looks like a good research paper to read:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Great to see that it is working for you.
Back to top
  
 
IP Logged
 
AubanBird
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 245
everywhere...
Gender: male
Re: Keto diet and cluster headaches
Reply #6 - 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...
Back to top
  
 
IP Logged
 
AussieBrian
CH.com Hall of Famer
*****
Offline


CH - It's all in your
head!


Posts: 3627
Cairns, Qld, Australia
Gender: male
Re: Keto diet and cluster headaches
Reply #7 - 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.†
Back to top
  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3545
Bremerton, WA
Gender: male
Re: Keto diet and cluster headaches
Reply #8 - 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...† Wink Roll Eyes

Take care,

V/R, Batch
Back to top
  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
RightSider
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: Keto diet and cluster headaches
Reply #9 - 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 . .  Cool . . . 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



Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3545
Bremerton, WA
Gender: male
Re: Keto diet and cluster headaches
Reply #10 - 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
Back to top
  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, thatís as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: Keto diet and cluster headaches
Reply #11 - 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
Back to top
  
 
IP Logged
 
RightSider
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: Keto diet and cluster headaches
Reply #12 - 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!  Grin

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!  Smiley

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
Back to top
  
 
IP Logged
 
Sean McE
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 143
Seattle, Wa
Gender: male
Re: Keto diet and cluster headaches
Reply #13 - 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.† †Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register †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
Back to top
  
 
IP Logged
 
RightSider
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: Keto diet and cluster headaches
Reply #14 - 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


Back to top
  
 
IP Logged
 
RightSider
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: Keto diet and cluster headaches
Reply #15 - 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
Back to top
  
 
IP Logged
 
RightSider
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: Keto diet and cluster headaches
Reply #16 - 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

Regards

RightSider
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3780
Auckland, New Zealand
Gender: male
Re: Keto diet and cluster headaches
Reply #17 - 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.
Back to top
  
 
IP Logged
 
AubanBird
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 245
everywhere...
Gender: male
Re: Keto diet and cluster headaches
Reply #18 - 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.† †Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register †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.†
Back to top
« Last Edit: Oct 29th, 2018 at 12:34pm by AubanBird »  
 
IP Logged
 
RightSider
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: Keto diet and cluster headaches
Reply #19 - 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!† Smiley

Regards

RightSider
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3780
Auckland, New Zealand
Gender: male
Re: Keto diet and cluster headaches
Reply #20 - 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.
Back to top
  
 
IP Logged
 
RightSider
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: Keto diet and cluster headaches
Reply #21 - 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! Grin), 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.† Cheesy

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
Back to top
  
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3780
Auckland, New Zealand
Gender: male
Re: Keto diet and cluster headaches
Reply #22 - 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.
Back to top
  
 
IP Logged
 
NicolŠs
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 6
Santiago, Chile
Gender: male
Re: Keto diet and cluster headaches
Reply #23 - 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!
Back to top
  
 
IP Logged
 
AussieBrian
CH.com Hall of Famer
*****
Offline


CH - It's all in your
head!


Posts: 3627
Cairns, Qld, Australia
Gender: male
Re: Keto diet and cluster headaches
Reply #24 - 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.
Back to top
  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
IP Logged
 
Pages: 1 2 3 
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!