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!  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 ( ) 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! 

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]

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. 

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.

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  (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