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Keto diet and cluster headaches (Read 32636 times)
Mike NZ
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Re: Keto diet and cluster headaches
Reply #50 - 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!
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RightSider
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Re: Keto diet and cluster headaches
Reply #51 - Sep 6th, 2019 at 2:35pm
 
Hey everyone!

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

Well, I’ve 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, I’ve 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 don’t as being keto, it’s 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. It’s 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!  Cheesy I still find it hard to believe how everything has changed. It’s 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 neuro’s who spoke at the conference also highlighted the success of the ketogenic diet in clinical trials. It’s just a shame that official ‘nutritional guidelines’ prevent many neuro’s from recommending the diet as a treatment. One headache specialist did say to me that they sometimes ‘mention’ it to sufferers, but often found a lack of belief, willingness to change diet, or fear of fat ( Roll Eyes) 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 I’ve 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 ‘fat adapted’ 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 ‘shadow of a shadow’ sensation I get (every 3-4 weeks) coincides with a drop in my ketone levels. I’m 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, I’ve 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!  Grin
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Breadlady
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Re: Keto diet and cluster headaches
Reply #52 - Mar 10th, 2021 at 10:50am
 
Hi Rightsider,
Really eager to get started on the LCH /Keto diet.  Can you recommend a good book with meal plans included, for breakfasts, lunches etc. I know the principles from having dabbled with Atkins many years ago, but could  really do with specific recipes, shopping lists etc.  And also for only 1 or 2 servings..
Many thanks
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Batch
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Re: Keto diet and cluster headaches
Reply #53 - Mar 15th, 2021 at 10:08pm
 
Hey Breadlady,

The following link should provide the information you requested.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The Modified Atkins-Ketogenic Diet is actually very easy.  Start it with a 24- to 36-hour fast drinking only water and taking the anti-inflammatory supplements (10K IU/day vitamin D3 plus cofactors.  When the fast is over, it's zero sugars (no fruit juices), zero wheat products (No Bread, pasta, cookies, crackers or pizza).  Avoid grain oils like Canola and Corn Oil.  Good oils/fats include organic butter, extra virgin olive oil, avocado oil and my favorite, extra virgin coconut oil.

You can eat all the free range organic meats, poultry, eggs and cheese you want.  A serving or two of wild caught fish a week is great.  You can even eat at Mickey D's or the BK if you order the burgers with no buns or fries and ask for water (I do this when I need a Big Mac or BK fix).  You can eat all the organic Non GMO green and colored veggies you want, but you should avoid high starch veggies and fruits like potatoes and bananas.  Limit fruits during the first month to a handful a day of dark berries like blackberries, blueberries, raspberries, boysenberries, pomegranate and dark grapes.  Again, make sure you’re drinking at least 2.5 liters of water a day.

If you want to make sure you’re eating correctly, pick up some ketone test strips at the local drugstore. A few drops of urine on the tan colored reagent patch will tell the whole story for you in a few seconds.  If the tan colored patch turns very slightly pink or darker pink, your body is metabolizing fats and tossing off ketones.  You’re doing great!   However, if you’ve cheated and eaten a sugary snack of something high in carbohydrates… the tan colored reagent patch will remain tan – Busted!

The 24-hour fast will cause your body to start metabolizing glycogen, a polysaccharide of glucose  a.k.a., blood starch that’s stored in your liver.  If you’ve a lot of glycogen stored in your liver, you may need to fast for another day or two or until your urine turns the ketone test patch pink.

I realize staying on a fast this long sounds draconian.  The good part about doing this is after you’ve burned through the available glycogen, your body starts metabolizing fats.  At that point you start losing those hunger pangs that drive you to the kitchen frig or cookie jar.

One of my favorite Atkins-Ketogenic meals is Broccoli–Garbanzo Bean Soup:

Ingredients:
2 medium sized fresh Organic Broccoli Heads (split into rosettes including stem)
1/2 cup sliced mushrooms
1/2 cup chopped onion
1 can Organic Garbanzo Beans/chickpeas drained
2 to 3 large Organic Jalapeno Peppers Diced
1 can chicken stock
Juice half lemon
1 to 2 tbs curry powder
2 tbs olive oil
Salt and Pepper to taste

Cut the stem end off the jalapeno peppers, split lengthwise in half then scrape out the seeds and placenta with a spoon.  This will cut some of the heat.  Rinse the Jalapeno halves under the faucet to remove the remaining capsaicin.  Julienne, cube or dice the jalapeno halves. Use food prep gloves if necessary.

Sauté or sweat the sliced mushrooms, chopped jalapeno peppers and onions in a tbs olive oil, season with garlic powder and pinch of salt.  I also like to use a dash of McCormick's Grill Mates Montreal Steak seasoning instead of salt.

Microwave the broccoli and garbanzo beans in a covered microwave proof container for 2 to 3 minuets until hot and the broccoli turns bright green.  Before cooking, drizzle a tbs olive oil, the juice of half lemon over the broccoli bean mix.  Season with garlic powder and a pinch of salt and stir.

When everything is cooked, dump it all in a blender along with the can of chicken stock and curry powder then puree until it looks like split pea soup.  I like to plate up in large coffee mugs.  It usually serves four.

Season to taste with salt and fresh ground pepper.  Top with a dollop of sour cream.  If you want to kick it up a notch, add a dash or two of chipotle pepper sauce.

Take care and please keep us posted.

V/R, Batch


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« Last Edit: Mar 15th, 2021 at 10:09pm by Batch »  

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Re: Keto diet and cluster headaches
Reply #54 - Mar 21st, 2021 at 6:23pm
 
Hi Breadlady

Apologies for the delayed reply. I haven’t been on the forum for a long time and didn’t get notified about your message. Only popped on here as it was CH awareness day and thought I’d take a look.

Batch has given you great advice above. Just to add, there’s lots of free resources on the web and you should have no trouble finding out what foods to eat. In short, and because I lack time and I’m happy to eat simple food, I now basically live off all types of meat, eggs, cheese, fish, cream, above ground vegetables, though I do allow myself onions. I avoid seed oils like the plague and cook in butter, bacon fat etc. I drink plenty of tea and coffee with milk or cream (not too much milk, coffee generally with lots of cream) diet soft drinks and as I can drink alcohol no problem now, its spirits and dry wine. I didn’t do any sort of 24 hour fast when I went ‘ketogenic’, like Batch mentioned, but I totally understand why he advised it. It will speed up the production of ketones when you start the diet (get you into ketosis quicker). It may also speed up and worsen any ‘keto flu’. But that’s not really a bad thing. Look up the ‘keto flu’ and make sure you increase your salt intake, either by salting your food or having those soluble (zero calorie) electrolyte tablets at least twice a day. I believe salt is very important anyway, with regard to clusters and migraines, and the evidence to suggest it’s bad for you is quite frankly, extremely poor and generally unreliable. Also, sugar, or should I say hyperglycemia, is a MASSIVE driver of high BP in the general population, but salt gets the blame.

I would recommend you do not do any sort of intermittent fasting when you initially go on the diet and eat the standard three meals a day (no snacking if possible and eat bigger meals if you feel like snacking all the time). I found IF caused problems when I first went on the diet, but recently I have managed to do it now (skip breakfast) on a regular basis and still remain headache/attack free. Now for around 2.5 years.

Give it time and do not cheat. You need to get into ketosis and produce ketones. Cheating will at best slow things down and at worst prevent any benefits ever happening. I only treat myself to carbs/sugar on Christmas day. But I suspect I could ‘cheat’ far more often and I would be fine. Then again, I love the diet and find it easily sustainable. Without any effort or discipline, I consume less than 30g of carbs a day. By the way, I never go hungry and almost never lack energy.

I hope that helps.

Kind regards

Rightsider
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Breadlady
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Re: Keto diet and cluster headaches
Reply #55 - Mar 24th, 2021 at 1:06pm
 
Hi Batch,

Many thanks for your help and great sounding recipe. The Amazon link you gave me led me to quite a few useful links also.

[quote author=587B6E79721A0 link=1534559885/53#53

The Modified Atkins-Ketogenic Diet is actually very easy.  Start it with a 24- to 36-hour fast drinking only water and taking the anti-inflammatory supplements (10K IU/day vitamin D3 plus cofactors.  When the fast is over, it's zero sugars (no fruit juices), zero wheat products (No Bread, pasta, cookies, crackers or pizza).  Avoid grain oils like Canola and Corn Oil.  Good oils/fats include organic butter, extra virgin olive oil, avocado oil and my favorite, extra virgin coconut oil.

You can eat all the free range organic meats, poultry, eggs and cheese you want.  A serving or two of wild caught fish a week is great.  You can even eat at Mickey D's or the BK if you order the burgers with no buns or fries and ask for water (I do this when I need a Big Mac or BK fix).  You can eat all the organic Non GMO green and colored veggies you want, but you should avoid high starch veggies and fruits like potatoes and bananas.  Limit fruits during the first month to a handful a day of dark berries like blackberries, blueberries, raspberries, boysenberries, pomegranate and dark grapes.  Again, make sure you’re drinking at least 2.5 liters of water a day.

If you want to make sure you’re eating correctly, pick up some ketone test strips at the local drugstore. A few drops of urine on the tan colored reagent patch will tell the whole story for you in a few seconds.  If the tan colored patch turns very slightly pink or darker pink, your body is metabolizing fats and tossing off ketones.  You’re doing great!   However, if you’ve cheated and eaten a sugary snack of something high in carbohydrates… the tan colored reagent patch will remain tan – Busted!

The 24-hour fast will cause your body to start metabolizing glycogen, a polysaccharide of glucose  a.k.a., blood starch that’s stored in your liver.  If you’ve a lot of glycogen stored in your liver, you may need to fast for another day or two or until your urine turns the ketone test patch pink.

I realize staying on a fast this long sounds draconian.  The good part about doing this is after you’ve burned through the available glycogen, your body starts metabolizing fats.  At that point you start losing those hunger pangs that drive you to the kitchen frig or cookie jar.

One of my favorite Atkins-Ketogenic meals is Broccoli–Garbanzo Bean Soup:

Ingredients:
2 medium sized fresh Organic Broccoli Heads (split into rosettes including stem)
1/2 cup sliced mushrooms
1/2 cup chopped onion
1 can Organic Garbanzo Beans/chickpeas drained
2 to 3 large Organic Jalapeno Peppers Diced
1 can chicken stock
Juice half lemon
1 to 2 tbs curry powder
2 tbs olive oil
Salt and Pepper to taste

Cut the stem end off the jalapeno peppers, split lengthwise in half then scrape out the seeds and placenta with a spoon.  This will cut some of the heat.  Rinse the Jalapeno halves under the faucet to remove the remaining capsaicin.  Julienne, cube or dice the jalapeno halves. Use food prep gloves if necessary.

Sauté or sweat the sliced mushrooms, chopped jalapeno peppers and onions in a tbs olive oil, season with garlic powder and pinch of salt.  I also like to use a dash of McCormick's Grill Mates Montreal Steak seasoning instead of salt.

Microwave the broccoli and garbanzo beans in a covered microwave proof container for 2 to 3 minuets until hot and the broccoli turns bright green.  Before cooking, drizzle a tbs olive oil, the juice of half lemon over the broccoli bean mix.  Season with garlic powder and a pinch of salt and stir.

When everything is cooked, dump it all in a blender along with the can of chicken stock and curry powder then puree until it looks like split pea soup.  I like to plate up in large coffee mugs.  It usually serves four.

Season to taste with salt and fresh ground pepper.  Top with a dollop of sour cream.  If you want to kick it up a notch, add a dash or two of chipotle pepper sauce.

Take care and please keep us posted.

V/R, Batch


[/size] [/quote]
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Breadlady
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Re: Keto diet and cluster headaches
Reply #56 - Mar 24th, 2021 at 1:29pm
 
Hi Rightsider,
Thanks so much for your info. I found the IF a trigger for headaches also, so have been easing myself in slowly, cutting down on carbs and sugar and upping the protein. I have now found plenty of online resources for the Low carb diet and Keto and will persevere as I dont have many alternatives left. I have been thru all the other preventatives with no good results and loads of intolerable side effects, having suffered migraine for 58 years and clusters for  the last 10 of those ! 
Kind regards,

Breadlady
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AubanBird
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Re: Keto diet and cluster headaches
Reply #57 - Apr 21st, 2021 at 5:07am
 
Just wanted to check in and give y'all an update. 

Well, i have been mostly pain free since i started this thread.  I'm still in the army and just got reassigned to my first desk job of my career.  It's been quite a wild ride, but i think 13 years of combat are enough for me lol.

Coronavirus has me separated from my wife until later this summer, but i really can't complain.  I have spent most of the last 7 years away from my family, so a few more months are nothing.

There were a few times that it was impossible for me to stick to a keto diet.  During those times, i got shadows and minor attacks, but nothing like they used to be.  And each time, those went away when i got back to a keto diet. 

All in all, i would say life is pretty good. 

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Re: Keto diet and cluster headaches
Reply #58 - May 4th, 2021 at 7:45pm
 
Amazing topic. I myself used to do Keto in 2016 lasting till 2018 but not due to CH. I had my last CH in 2010. "Fixed" them with Morning Glory seed busting until cycle was over and then in 2011 and throughout until 2016 i been dosing every 6 months in March and August with 300-400 MG seeds. Been PF for 11 years until 25th December 2020 when I was already eating normaly and drank champagne which brought heavy shadows that last until now (half year almost). I am busting atm every few weeks with LSA seeds again in hope to get rid of shadows. Unfortunetly they are getting more persistent and Cluster-like.

I will give keto a try as I am familiar with it my only problem is:

conspitation when on keto, How do you provider lots of non-carb or low-carb fiber? How do you deal with constipation? It was a real deal when I was on keto sadly.
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Batch
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Re: Keto diet and cluster headaches
Reply #59 - May 7th, 2021 at 8:03am
 
Hey AubanBird,

Thank you for your Service.  I recall my first desk job after 14 years in the cockpit of Navy fighters, Gun Boss on USS Kitty Hawk.  Once I got over the fact that I wasn't going to get the ride of a lifetime catapult shot a couple times a day and the thrill of burning through 5 tons of JP-5 in an hour with a supersonic dash now and then followed by snagging an OK 3-wire arrested landing...  it was ok... although monitoring weapons movement around the ship kept me away from my desk most of the time.

Howz the head?

Take care,

V/R, Batch
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Re: Keto diet and cluster headaches
Reply #60 - Jun 21st, 2021 at 2:38am
 
Hi MattyAA:

MattyAA wrote on May 4th, 2021 at 7:45pm:
I will give keto a try as I am familiar with it my only problem is:

conspitation when on keto, How do you provider lots of non-carb or low-carb fiber? How do you deal with constipation? It was a real deal when I was on keto sadly.


In my case, constipation was a big problem the first time I made Low Carb diet.

I avoid it mostly with:
  • No less than 2.5 liters of water a day.
  • Having dairy products, like milk, yogurt.
  • Green veggies: as much as you can. The more fiber they have, the better.
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Re: Keto diet and cluster headaches
Reply #61 - Jun 24th, 2021 at 12:37pm
 
Hello!

My husband is the sufferer and he's tried everything under the sun to get rid of the headaches. He's been in a cluster since February or March. His last cluster ended in November last year, after 7 months of pain. He's episodic but now he fears he's becoming chronic since we really don't know why his last cluster lasted 7 months.

He's not responding to the D3 regimen (Batch, I sent you an email btw), or busting, or any meds, including Emgality.

I've been reading about the keto diet and how it helps with headaches, migraines, epilepsy, etc. I'd like my husband to give it a try, but he has high cholesterol and  takes Atorvastatin.

Does anybody know if high cholesterol gets higher with this diet? Does high cholesterol medication have an effect on ketosis? Should he continue taking this medicine while on the keto diet?

Any information on this med and the keto diet is greatly appreciated.

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Re: Keto diet and cluster headaches
Reply #62 - Jun 24th, 2021 at 5:40pm
 
Read this
   
Anti-Inflammatory Regimen and Survey

a lot of good tips in this read.

Mark
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Re: Keto diet and cluster headaches
Reply #63 - Aug 20th, 2022 at 5:04am
 
Hello everyone!

Just thought I’d post an update. Basically, I’ve remained on a ketogenic diet since I first posted in 2018. To cut a long story short I’m still in full remission and have not had a cluster headache for nearly four years. In previous posts I mentioned that I would get a very mild shadow every now and then. Well, I don’t get those anymore either. I’m also coming up to four years without medication and obviously, I have not needed any abortives. I basically have a completely normal life and have no issues when I have disturbed sleep, drink alcohol or get dehydrated. These things always caused massive issues. I remain in excellent health, have no medical issues whatsoever and can still very long bike rides fasted and without consuming any food during the rides. I also now have the same size waist as when I was 18 which is a bonus  Cheesy (now 49)!

As you can read in my previous posts, I experimented with a few things at the same time as starting the diet. However, I don’t do any of those things anymore and I am 100% convinced that it is the diet alone that has caused my remission. I do still take high dose D3 in the winter, but I took high dose D3 all year around for many years when I was chronic. I can go months without taking any supplements at all and nothing changes. Whilst intermittent fasting (skipping breakfast) caused issues with nocturnal attacks when I first started the diet, I never have breakfast now and it causes no problems. That said, I would recommend that anyone trying the diet for their clusters have a carb free breakfast in the beginning and take D3 and magnesium.

Kind regards

Rightsider
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