Hi
I'm not really new to this board, but I thought I'd share my story. I'm 42. Started clusters at around 16. I went through a lot of pain and learned to get through the hard way - alone.

I started episodic. After about 3 years I switched to chronic. That lasted for about 4 years, then back to episodes. I learned my triggers ways to lessen the pain, what caused rebounds, etc. It was a very long road.

After around 18 years I found that running at a good intensity and certain weight lifting exercises would abort my attacks.
I found that fasting and low calorie intake cut my cycles from 3 months to 3 weeks.
Stress made the attacks more frequent so I started meditating and keeping a good attitude (I stopped moping and acted as normal as possible). I quit avoiding things from fear of an attack.
I started eating a ketogenic diet for health reasons.

Now by exercise, intermittent fasting, and a ketogenic diet, my cycles are painless. A slight change in mood and a slightly elevated anxiety, but no headaches.

If I had not had these headaches, I would not be as healthy.
I would not appreciate a normal day as a good day to be alive.
Without clusters I would not have tried so hard to be good at my job to compensate for lost time, and in general a drive to take advantage of the pain free time I have.
These headaches have stopped my from being a frequent drinker.
They have weeded out shallow friends from true friends.
I am so glad that I have clusters. They have made me a better version of who I am.

God luck to you all.

Scorpion,

Staying in good physical condition through regular exercise is something all of us should do...  That said, there is a limit... 

How many of you remember James Fuller "Jim" Fixx...  An avid runner often running several miles a day... authored the 1977 best-selling book The Complete Book of Running.  He also dropped dead of a heart attack at age 54 while jogging...

Moral of the story... If you're not a long time runner or don't have a regular physical workout routine... see your PCP before starting any strenuous physical activity... 

I happen to subscribe to the heartbeat theory... you only get so many... so why waste a limited supply of heartbeats running when there are so many other pleasurable methods of improving cardiovascular health.  Think about it... 

If you want to enjoy even more health benefits...  and prevent your CH in the process...  check out the following link.  It has data on 62 health problems prevented or treated with a simple vitamin nutrient:

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

Of course, a healthy whole food diet, with lots of fresh fruit and veggies, no sugar and no corn or grain based oils... (Lard, bacon grease, olive oil, avocado oil, and my favorite, coconut oil are all good for you in moderation).

Take care,

V/R, Batch

Please don't turn this into a healthy living thing.

This is about how I do not get headaches any more. I get cycles, but not the headache. I do not need pills. I do not need oxygen masks and tanks. I don't need shrooms or imitrex.I don't need anything at all to help get me through except my LORD and Savior.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
If you are a guest:
youtu.be/rGgoCm1hofM
This is a link to a great example of a healthy lifestyle.
...
But I am not teaching health. I'm trying to let the cluster community know that you can live with clusters and be pain free. Physically independent and pain free.

On the finite heartbeats, agree do disagree. I seriously doubt that living sedentary your whole life will make you live longer. Also I very much enjoy strength training. It's one of my pleasures in life.

I smoke Camel straights, smoke copious amounts of Montanas finest herb, eat lots of Bacon and Angus cow meat.  I use butter on everything but green vegetables which I avoid like the plague. 40% whipping cream makes the coffee I drink by the pot palatable and I can't even tell ya about the baked goods I gobble down.
  I've been pain free for over ten years.  I have found the CURE.
 
             Potter

Caring and sharing your story can sometimes be the biggest test if your able to stay pain free. Sends my blood pressure through the roof. But I truly love my brothers and sisters.

Definitely not a place for a pain free heart though.
As far as ketogenic goes. Say what you will. It is used for children with seizures. It's used to heel people with hormone imbalances. My Dad had a heart attack a couple of years ago, from a sedentary and drug addicted lifestyle. His doctor told him that a ketogenic diet would be good for him.

Don't knock something just because you don't understand it.

BTW Potter -

You are 50% there.
Cut out the baked goods completely.
- no bread, grains, rice, potatoes, etc...
- no sauces that have sugar in them like bbq and ketchup (mayo is ok)

Read the labels. If it has sugar, even 1 gram, its a no.
You will have to count your carbs that aren't from sugar and keep them below 20 grams a day.
You need vegetables. They are important. Learn which ones have too many carbs and avoid those

Basically your daily intake should be around:
160 grams fat
15 grams carbs - No Sugar!
160 grams protien


Add some good fats like:
olive oil
coconut oil
fish (salmon and herring are good)
ease off on the dairy a little (grass fed if you can)

Cook in olive or coconut oil
Eat whole foods:
eggs
fish
beef
whole chicken (with skin)
Not:
lunchmeat
sausage
processed meats in general

After about 3 or 4 days you will crave bread and pasta and starchy food. You will be going through withdrawls.

After 2 weeks your brain will have adapted to burning ketones instead of glucose and you will start to have bouts of heightened mental clarity.

When this happens you will know that you are keto-adapted.

I'm thrilled you've found a way to tame your beast, Scorpion, and taken the time and care to pass on your plan in the hope it may help others who must endure this nightmare.

I truly hope you remain pain free for ever but if there is the occasional setback there's always our jolly crew aboard the good ship ch.com.

Cheers and beers,

Brian down under.

I'm in agreement with Brian, well done Skorpion in finding something that works well for you plus your CHs. My supporter is also a fan of the diet you're on and I can see how it is benefiting here a lot (she doesn't get CH). Naturally I've also been following it, although it doesn't seem to help with my migraines, my CH isn't an issue with the D3 and possibly helped by diet too.

wrote on Oct 4^th, 2015 at 11:05pm:

I smoke Camel straights, smoke copious amounts of Montanas finest herb, eat lots of Bacon and Angus cow meat.  I use butter on everything but green vegetables which I avoid like the plague. 40% whipping cream makes the coffee I drink by the pot palatable and I can't even tell ya about the baked goods I gobble down.   I've been pain free for over ten years.  I have found the CURE.                Potter

I'm off to the supermarket now !    ;D
...cant believe you don't like butter on vegies !

I too am happy you've found a pain free state scorpion and It may well have an the same effect on some people, But the one thing I've worked out, is that no two people are the same, what works for one person for some reason wont work for another. So many triggers, everyone has different reactions, makes me think the condition we have may be caused by dozens of factors, diet may well be the reason for many, but unfortunately probably not all, its fantastic it works for you.
I'm with batch and his theory    that the heart has just so many beats in it !!   or maybe just for some
   Potter, Its got to be the Montana finest herb !  I mirror everything else on your culinary intake.... its gotta be that !
                               ;D

colin

Hey Scorpion,

I'm with you 100% on your diet and have been suggesting the same diet here at CH.com for many years.

It's great to hear you're pain free.

Take care,

V/R, Batch

Thanks for the good vibes!

I'm feeling a bit playful today, so this is all in fun...

Okay, so I don't subscribe to the finite number of heartbeats in a lifetime,
but for the sake of argument, lets assume this is true.

First lets get the numbers:
There is an average of 2.5 billion heartbeats in a lifetime.

The average sedentary person will have a heart rate of about 80 bmp
That's -
115200 bp Day
806400 bp Week
41932800 bp Year
About 59 years of life

The average athletic/fit person will have a heart rate of about 60 bpm
So lets add in the training heart rate:
Resistance training -
Lets do dead lifts 4 days a week for 45 minutes per day
The heart rate will be elevated to 160 bpm for about 1 minute per set
Heart rate will be elevated to 120 bmp 30 seconds in between sets
That will leave us with 3900 extra heartbeats above our 60 bmp each work out day
That's 15600 extra beats per week

At 60 bpm:
That's -
86400 bp Day
604800 bp Week
31449600 bp Year
minus training leaves us with:
32260800 bp Year
So we lose about 1.5 years of life
Which equates to about 77.5 years of life
8-)

Well I know for one, when you get to my age, Id like to hang onto those 1.5 years of life.  [smiley=lolk.gif]

Cheers [smiley=beer.gif]

My cycle is over.
All the neurological symptoms are gone and my sleep is back to normal.
The beer is good.
I never had an attack.
This will put me on a path to 4 years pain free.

This was without a doubt the result of the ketogenic diet.
I toyed with it cautiously, and the symptoms were consistently predictable. I even drank a beer because it doesn't break the rules of ketosis and it put me in a very groggy anxious confused state with mild cluster symptoms, but no HA.

I thank God that I didn't go through this cycle in pain. I had two gigs, one was an opportunity to play on a large venue. I would have lost that opportunity. Plus my work is in the process of promoting me to oversee the efficiency of their data processing. That would have went down the tubes as well.

Take care guys and gals. I hope the ketogenic diet can give a pain free life to another.

By the way Hoppy - that's an added 18.5 years not 1.5 less  :) (59 yrs v/s 77.5)